Calling All Harrington Rod, Spinal Fusion People

Harrington Rod and Spinal Fusion and Scoliosis

Harrington rod, fused to my spine

Do you have a harrington rod? There were thousands of us in the ’80’s getting these things in hospitals. An event, actually, that I’ve never really fully processed (although I hope I’ve accepted it?). At the time (I was 14), my mother sought the opinions of three New York City surgeons, and they all said the same thing: only surgery will stop the progression of this scoliosis.

28 years later, I am revisiting this steel rod situation. Studies prove that metals, even those touted as inert, corrode inside the body.

Corrosion of spinal implants retrieved from patients with scoliosis


Spinal implants retrieved from 11 patients with scoliosis were examined. All the implants were posterior instrumentation systems made of 316L stainless steel and composed of rods, hooks, and crosslink connectors. Corrosion was classified into grades 0 to 3 based on macroscopic findings of the rod surface at the junction of each hook or crosslink connector. Grade 0 was defined as no sign of corrosion, grade 1 as surface discoloration, grade 2 as superficial metal loss, and grade 3 as severe metal loss. The depths and characteristics of metal loss areas were examined. Spinal implants showed more corrosion after long-term implantation than after short-term implantation. Corrosion was seen on many of the rod junctions (66.2%) after long-term implantation, but there was no difference between the junction at the hook and those at the crosslink connector. It is thought that intergranular corrosion and fretting contributed to the corrosion of implants. The current study demonstrated that corrosion takes place at many of the rod junctions in long-term implantation. We recommend removal of the spinal implants after solid bony union.

Here’s a study that looked at chromium levels in blood and urine. If you’re wondering how they know whether corrosion took place, it’s almost always from ‘retrieved instrumentation.’ Those with metal implants had higher chromium levels. And “corrosion significantly raised metal levels, including nickel and chromium in serum and urine when compared to patients with no radiological signs of corrosion and to volunteers without metallic implants”.

Metal levels in corrosion of spinal implants


Corrosion affects spinal instrumentations and may cause local and systemic complications. Diagnosis of corrosion is difficult, and nowadays it is performed almost exclusively by the examination of retrieved instrumentations. We conducted this study to determine whether it is possible to detect corrosion by measuring metal levels on patients with posterior instrumented spinal fusion. Eleven asymptomatic patients, with radiological signs of corrosion of their stainless steel spinal instrumentations, were studied by performing determinations of nickel and chromium in serum and urine. Those levels were compared with the levels of 22 patients with the same kind of instrumentation but without evidence of corrosion and to a control group of 22 volunteers without any metallic implants. Statistical analysis of our results revealed that the patients with spinal implants without radiological signs of corrosion have increased levels of chromium in serum and urine (P < 0.001) compared to volunteers without implants. Corrosion significantly raised metal levels, including nickel and chromium in serum and urine when compared to patients with no radiological signs of corrosion and to volunteers without metallic implants (P < 0.001). Metal levels measured in serum have high sensibility and specificity (area under the ROC curve of 0.981). By combining the levels of nickel and chromium in serum we were able to identify all the cases of corrosion in our series of patients. The results of our study confirm that metal levels in serum and urine are useful in the diagnosis of corrosion of spinal implants and may be helpful in defining the role of corrosion in recently described clinical entities such as late operative site pain or late infection of spinal implants.

I am writing this post to see if any readers can share their experience, or maybe answer these questions. How long have you had a spinal fusion/rod? Do you have any health issues (possibly mysterious)? Have you had any metal allergy blood tests done? Have you ever considered looking into rod removal?

EDIT September 2014:

When I wrote the above post, I was concerned that metal ions had been collecting internally and causing who knows what pandemonium. Since then, I’ve taken the MELISA test to see which metals I was allergic to. I really recommend this, even though it’s expensive. It may give you more peace of mind as to which metals you may be sensitive to. It’s especially helpful when you know what materials make up your rod.

If the MELISA test is accurate, then it turns out I am not allergic to any metal. But if I were, and I was having chronic health issues that couldn’t otherwise be explained, I might consider removal surgery. But there is much you can do before getting to that point!

Currently I feel great, so I no longer wonder about the toxicity of the rod and screw metals. I am detoxing mercury and other metals through a detoxification program that uses IMD (Intestinal Metals Detox) and other products from Quicksilver Scientific. This also adds peace of mind.

I know many of you who write in are having tough times with pain and uncertainty. I have been there! And am here to tell you it can get better. Way better.


Related Posts:

Coming Soon: A Group Session for Spinal Fusions

Spinal Fusion, Steel Rod and Metal Allergy

An Orthopedic Surgeon’s Take on Removing My Harrington Rod



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302 Responses to Calling All Harrington Rod, Spinal Fusion People

  1. Judi Klarer says:

    My mother had a rod and clips placed in her back toward the end of the 80’s for a dengenerated back. In the year 2006 she was diagnosed with pulmanary fibrosis. Two causes of this disease are nickel and chromium particles in the blood according to what I’ve read. She had doctors in both Florida and Michigan. Several of them asked her where she had worked and whether or not she was exposed to any type of chemicals. She unfortunately passed on in 2008.

    • Betty says:

      So sorry for your loss, I read this and think wow another thing to worry about with having the Harrington Rod. I have been pain daily since May 2014. I get to see the specialist in a week. My rod has been in for 38 years. I think I have been able to put off the symptoms as I took up Hot Yoga…but eventually that stop working. My biggest worry is being told there is nothing to be done…except taking pain pills and living on disability…if I qualify even. Prying something can be done! I want my life back! As with some of the other post, I too never let the rod interfere with living..I did it all…so to not being able to do nothing is killing me emotionally. Is there any one who has seen spinal specialist in Vancouver BC Canada?

      • Brandon says:

        I have the Harrington Rods in my back. They also broke my right rib off and used it to fuse the rods to my spinal cord. My life hasn’t been right since. I’m not independent anymore and I can’t get out and do stuff with my kids.

      • George Clark says:

        I have had mine sine 1972 at the HSS in NYC. It’s been a struggle as you all know too well. My pain used to be at the base of my spine but about 5 years ago the top of the rod (T10) started to have pain and now my right and especially left hip is excucriating. My rod goes down to L5. Lying down even causes me more pain now, and I must turn over in bed every 10 minutes or so and sleeping is tough. I wish I qualified for disability but do not. I have exercised my whole life to manage the pain but now that is a struggle too. I went to see a surgeon, and he said the fusion was now creeping naturally up above my rod (T10) into my neck. I can no longer turn my head to the left. And I fear it will also freeze all of ,my neck soon. I can still walk but that is getting harder too. I take solace and inspiration from those who struggle onward with even greater challenges. My surgeon says trying to take the rod out would be life threatening and does not want to do it, but I can’t afford it anyway.

        • Kathy says:

          I don’t understand why you don’t qualify for disibility. Maybe apply again?

          • George Clark says:

            For disability you need to be employed with an employer who pays into the system and them get laid off and unable to work. I work freelance and do not qualify at least in California. I have not checked in to Federal help. I am looking for work I can handle.

        • Sharon coffield says:

          I had a scoliosis revision surgery almost a year ago. Please, go on “our playback syndrome group” on Facebook. My pain level has decreased dramatically and I feel human again. All the people on the site have either had revision surgery or are preparing to have it. It can save your life. It has mine.

          • Amanda says:

            Wow, Sharon. Great to hear!! I will check this out now and I hope others do too!

          • Amanda says:

            It’s Our Flatback Syndrome Group on Facebook. Thanks again for letting us know about it.

          • Donna says:

            im 56 & have had my rid fir 46 years . Most of my spine was fused due to scoliosis as a child ( entire thoracic & extending into lumbar ). I have severe osteoporosis now, but prior to tat I was time I’m not candidate fur rod removal . Told it was too risky . Any advice on treatment for treating bone loss & corosion issues .

      • Michelle says:

        I can relate Betty.
        How are you now as I see this Post was in 2014 ?

    • Jake Hortons says:

      The rods have been in my back for 50 years and no problems with them.

  2. Dana says:

    Rod since 1983, I’m 42 now. I would like to know removal success stories. I have terrible pain!! Appt at Bayor in ft Worth in two weeks. Many one out there have success in removal!?

    • Heidi says:

      I am curios on the removal also, i have had two Harrington rods in each side of my spine and a spinal fusion out of my right hip, I broke my back in half,paralyzed from the waist down for 6 months, now 28 years later, been healthy and do whatever i want, carried two kids, I do it all, but now my sciatic nerve is hitting something, right leg drags at times and i can’t do crap when acting up, I have heard of the rods breaking or screws falling out and causing problems, anyone else.

      • Amanda says:

        Hi Heidi,

        Thanks for writing. Can you find an Egoscue therapist to see if that can help? I feel much better when I do my e-cises every day.

        • Kelly Marie says:

          Heidi- I had my harrington rods placed in 1995 and now 19 years later decided to have them removed. I go in for surgery in 10 days. After doing a lot of research the past 6 months and living with pain daily, I figure this is the best decision to make. My aunt also had harrington rods placed as a teenager and now at 54 she is on disability from the pain and sciatica. I found so much information on the hardware corroding that it scares me. I get times of burning pain around the rods and the only medical professions that even understood that was physical therapists. I will keep you posted on how my hardware/rod removal surgery goes.

          • Amanda says:

            Please keep us posted. We are sending you warm wishes for a beautiful outcome!

          • Christine says:

            Can you please text me 3152226818 with how you had your rods removed I hate mine I MADE THE BIGGEST MISTAKE AND I NEED HELP

          • Amanda says:

            Christine I hope you are feeling better…Can you tell us more about what happened? I bet we can figure something out to improve your situation.

          • charlene says:

            How did your surgery go? I need to have survey in January they are taking out half of my rod,ever heard of that? Please contact me at my email cause I may never find this site again:-)

          • Wayne says:

            Kelly Marie;
            Our daughter had one Harrington rod placed by surgeon at Toronto Sick Childrens Hospital 29 years ago and is currently experiencing numerous problems with pain.
            Did you have the surgery for removal in 2014? Who and where is the surgeon located and how are doing?

          • Amanda says:

            Hi Wayne,

            I had my surgery in NYC at the Hospital for Special Surgery 30 years ago. Dr. Levine is retired. Where is your daughter’s pain? Do you feel it’s from the rod directly? Sometimes it can be felt indirectly. For example, you can have a rod fused to your spine, but it may be pulling fascia that are connected to the left side of the neck etc.

            There is a surgeon who did a rod removal surgery on a reader and it was very successful. Dr. Cunningham at Hospital for Special Surgery.

            Do let us know how it goes. I send your daughter my very best wishes.

          • Kim Lee says:

            Please, please, need to know how did the rod removal go? I’ve had the rod in my back for 31 years and I’m thinking about removing it. Thanks in advance for the information.

          • Janet says:

            I am wondering if you had the rods removed. I have had my rods in place since 1969/1971. I am having days of not being able to straighten up and lots of stiffness and pain. About 10 yrs ago I had a lot of burning pain in my hip, but after changing my diet (going plant based–increase of antioxidants and eliminating animal foods which are inflammatory), beginning walking on a treadmill and losing 30#’s I have been pain free until the last 6 months. I lead a very active life at 59 yrs old and want to continue that….wondering if I need to consider being proactive and finding a doctor that is familiar with flat back syndrome. I just stumbled across this in the last few days. I’ve never had any explanation of what is happening to me.

          • Amanda says:

            Hi Janet, Great to hear you had had good success with a diet change. Food is medicine as we know. Where is your stiffness? I know we all are affected differently. I really like Egoscue Therapy. Have you heard of it?

            I am going to start a monthly Skype video session for people who are interested in doing simple Egoscue exercises with me. There will be no charge for this. I’ll be sending a post out soon about it. Perhaps you’d like to see if some of these e-cises will help. If so, please respond to that post and we can connect privately.

          • sue says:

            Hi Could you also keep me posted. I am scheduled for a revision on my scoliosis in a little while. I was operated on at the age of 16. I am now 45. My herrington rod is still in my back, My rod has come out of place which is creating a lot of pain for me. My specialist is recommending that I get the rod removed. Don’t know what to do.

          • Lizz says:

            Kelly Marie, how did the removal go?

      • Lisa says:

        I have two 8 inch Harrington rods placed in my back on June 19th 1987
        I had a major car accident in which I broke my back and decompressed l-1 thru l-4
        I’m wondering about this metal toxicity
        I have been on disability since 2000 due to issues with my back

        • Amanda says:

          Hi Lisa. I think if you are detoxing on a daily basis – whole organic foods, quality sleep, herbs for liver/kidney cleansing, good water etc – I wouldn’t worry about the metal toxicity unless you are allergic to the metal, which you can find out about at Melisa Testing. Check out my liver cleansing ebook on the site. That will help your body get rid of gunk so it has the energy to help you feel better.

    • sheila says:

      Did you ever have surgery?

    • Rusty says:

      Put in Jan. 7 1985 They broke sometime after that ??? got mine out in 2005 .. I’m 50 NOW . back pain a lot , but I still work when I can .

    • Laurie Petitti says:

      I had a single Harrington rod implanted at Loyola Medical Center in Illinois in the year 1978. 17 years later I took a fall that dislodged the rod. I had the rod removed. I was 17 at the time of my surgery and was toldby my surgery I would surely have spinal compression issues down the road and HE WAS RIGHT! I’m 56 now and have a herniated disk L4-L5 & a pinched nerve of the L5-S1. I’m in constant pain and no surgery can repair this. MY ADVICE IS do NOT have the Rod removed, it keeps your spine stabilized and prevents future need for surgery and a lifetime of Pain and Opiod pain medication. Only have the rod removed if like with me there’s no other option. I hope this helps someone who needs to make this life changing decision.

      • Amanda says:

        Thank you Laurie. We appreciate your contribution. I hope you will feel better soon. Do you know Dr. John Sarno’s work?

      • gregory Gilmer says:


      • Janine Laz says:

        Hi Laurie- I had a horseback riding accident April 1981. I was JUST turning 17, I shattered L4-L5 and my ortho suggested the Harrington Rod fusion, fast forward I am 54 now and have had NOTHING but pain for the past years, chronic, as I am sure you can relate. I would be so afraid to have them removed, it is fused so well, freaks me out to see the XRAYS. The Epidural shots help me emensely, but I like to get them at least every 1-2 months….. I was wondering how you all cope?

    • Jenny says:

      Hi, I saw your post on removal of your rod. I know it was years ago, so you might not even see this message. Hoping you will. If it was successful, who did you see, if you don’t mind me asking. Was your doctor good and did it work? I had mine put in a 1988. I need to have mine removed but it’s really hard to find a good doctor that I trust. My doctor that put it in is good but he’s telling me not to remove it. When they removed a hook that was coming out on its own, it had corrosion. If this had corrosion then the rest of the instrumentation must have corrosion too. I’ve been sick for years and no one can figure out why. I think it’s due to my rod making me sick.

      All my best, Jenny H

  3. Carolyne Tilford says:

    I had Harrington rod and fusion for scoliosis in the mid 70’s. I have never heard of the fibrosis thing but unfortunately have no health insurance right now. Have constant bouts with terrible coughing. Also need to do something to repair my flat back syndrome. I’m in Louisville Ky. I’ve always said we were total experiments!! I am seeking help to get into a doctor.

    • Amanda says:

      Can you go to an experienced naturopathic doctor near you to see if she can figure out the coughing?

    • robin says:

      I had a herrington rod implant w/bone fusion from my hip. I tried to get on disability but unfortunately my lawyer forgot to go to the hearing. so I just decided to put my big girl panties on and endure. I have worked since since 1990. had pain in lower back but kept going. unfortunately I fell in dec. of 2013. the only thing that saved me from breaking my back was the rod. so I was off work for 2 months trying to recuperate. I have a lump that has not went down and the docs said it is probably where I took the fall. the specialist has giving me pain meds and valium for the spasms. I returned to work only to find I still am having spasms (can’t take the meds at work) and pain. Called them back and told them I had to leave work cause it was hurting me. I got a rude awakening. Their remark was ” we don’t give anyone any more time off work . We don’t recommend total disability unless we do surgery” . ok so now I guess I have lost my job after 13 yrs and screwed. any suggestions?

      • Hi Robin I have had fibromialgia , chronic pain and chronic fatigue since 1991 I had Harrington rods in my back in 2003 And where they took the peace out in my hip bothers me the worst they’re telling me that l’m getting arthritis in the my lower back I understand the spasms this is going to sound funny to you I have had cramped so bad I have scar tissue in my rear end from the muscle cramping so bad the only thing I could find that help me with this was soma and vicodin but now our good government has to take care of the people that are on the street with their drugs so the chronic pain patient’s can’t get soma anymore more because it’s a no no its sold on the street now I have the same kind of cramps again I’m 59 years old and I’ve had it since I was 39 with the fibromyalgia so I don’t know what’s causing it but now I’m falling a lot I’ve hurt myself severely a couple of times something’ is going to break one of these days I think it’s a shame that our government is more worried about the person that’s on the street doing drugs than the person that is in pain I’m just asking for quality of life not quantity our government stops it for us.I wasr told by a doctor my neck is tilted 30% because of my muscles ,my shoulders droups down and the otherr ones is up and its all to do with my muscles I think it’s horrible. the Docto’sr can’t take care of because of the government

    • Lisa says:

      Hi. Thank You Amanda for suggesting i read these pages…while its nice to know Im not alone i do wish no one had to go thru this. Im an Australian resident who had Harrington Rods Clamps and bone fusion back in 1976. The rod broke at the top and the clamps broke also, the bone fusion disintergrated so in August 1981 i underwent repair work. My curve is 75 degrees at the top and 63 at the bottom. I have lived with pain for a long time. I wake at night to roll over in bed as i cant turn over like i did before surgery. These days my pain is just so much worse…its impacting on my quality of life as i cant do the the things i used daughter and granddaughters give me a ceiling fans etc. I used to love to knit and crochet but sitting for to long is a big problem…i dont go out much anymore as i cant walk very far and i cant sit to long in a car…i cant use buses as trains as the jolting almost kills me…I recently spent time in hospital with chest pain i knew came from my rod not my heart…the doctors wouldn’t listen to me and did all the cardiac tests they do in those now I am looking for a new GP someone who will listen…but it seems the revolving door policy is well and truly alive here so its going to take time….

      • jill says:

        Lisa. I had my rods placed in 1988 and had to have them partially removed 4 months ago. I was diagnosed with flat back syndrome last year and was in constant pain. I could not stand straight or stand up for long periods of time. My rods were in tact but the lower portion needed to be removed, my fusion broken, and my back reshaped and refused with new hardware That had a curve to it. The 1st few months were very hard, but they gave me plenty of pain meds. I was very weak for a long time. I still have a very long way to go But It was totally worth it. I would do it all over again in a heartbeat. Finding a surgeon that does salvage surgeries and is familiar with flat back syndrome was the key. Most regular spinal surgeons do not know what it is and can not fix it. It is a very difficult surgery on your body and takes a long time to heal. I was 12 for my first surgery and 38 for this one. This was so much harder for me. But again, totally worth it. The pain I feel now is not the same as the constant pain I was in before the surgery. This is post op healing pain. Please look up the condition and you will see that it describes what you are going through. I walked leaning forward, and the condition will never get better. You will continue to get worse untill you are walking looking at the ground.

        They only removed the bottom part and left the top. They replaced the bottom harrington rod with a newer technology. I actually got an inch taller. The risks are the same as your first surgery, most common risk is infection. But your surgeon will take great precautions against that. The rods in my back were there for more than 25 years and came out easily. It’s different for everyone. The reason so many of us suffer for so long is because our family doctors and spinal surgeons do not know what flat back syndrome is. Finding a specialist who knows what it is and how to diagnose you is the key. I spoke to my family dr about it and he had never heard of it. I had an appointment with the head of the neuro department at a world renowned hospital and he did not do that kind of surgery and had never actually seen a case of flat back syndrome. I was lucky to find 1 surgeon on my side of the state. Most people have to travel out of state to find a surgeon, that is how rare it is To find someone who can help. That is why we suffer for so long. Your curve can always get worse, even with rods. I would consult an orthopedic spinal surgeon and get new scans. they would then be able to advise you on your next steps and if surgery is right for you. Good luck!

        • sheila says:

          It is good to know that someone had this done. I am scared. What kind of brace were you in and how long? How long were you in the hospital? Anything will be appreciated. I am lost. I do not even know if the doctor can perform this PSO surgery. I will find out next week.

          • sheila says:

            I live in S.C. Beaufort. Charleston is the closest big town to us. can you tell me something about your recovery? And what I can expect?

        • Laurie says:

          How do you go about finding a doctor that is well versed in flatback surgery? Thanks!

        • Allyssa says:

          Jill, thank you for your story. Please tell us more about the revision surgery. Where is the incision(s)? Did you have to provide several pints of your blood months in advance? Did you have a bone graft, if so from where on your body? How many hours were you in surgery? How long was your recovery in hospital post surgery?

          I had scoliosis surgery with Harrington rod and spinal fusion in 1985 at age 11. Surgery and fusion complete success. I have always been extremely athletic and everything has been fine until about 2007. As with most, I am experiencing pain/flat back and have been for approximately seven years. I am able to compensate for my flat back but of course that takes its toll. I look normal on the exterior for now but concerned quality of life will continue to decrease in the long run as I age. Contemplating the opportunity costs associated with revision surgery. I do not want to worsen situation with surgery if not necessary. Also, you are correct, it is useless to seek consultation from orthopedic surgeons or scoliosis physicians who do not specialize in complications from Harrington rod/fusion and flat back syndrome. They are few a far between. Thanks again for sharing your experience. Any further information is very much appreciated.

        • Susan says:

          Jill, I’m wondering if you would be willing to give me a call and share a few minutes with me about your surgery. My case is similar to yours. Fusions about 30 yrs ago, flat back syndrome and I believe I just popped my Harrington rod. I did thi wit a lower fusion years ago but had no flat back syndrome. That came w the additional fusion. Anyway, I am at the beginning stage of search ion for the right doctor!!! I’m hoping you might give me the name of your doctor and tell me how you’re coming along. I truly hope you are doing well. Do you Facebook ? If yes, I am Susan Tidwell and you can private message. I’m the one w a profile picture of 3 women – the center one in a pink dress standing in front of a church. Thanks mucho

          • Alva says:

            Had scoliosis surgery in 1979 Kernan’s Childrens Hospital in Maryland. I was 13. Got Harrington Rod and it’s still in me 37 years later. Stiffness I expected but I have had some major health issues over the years. Developed a seizure disorder out of the blue in my 20’s. So every day 800-1000mg Tegretol. Epstein-Barr in late 30’s or early 40’s. I have high BP but that I get from my mom’s side. I just wonder crappy coincidence or ?? I was 5’5″ now I’m 5’3″. (I had just chalked it up to being 51.) Have had 3 kids,1st was vag other 2 preemies and I had C-sections. I get stiffness at top and lower than waist down. I’d like to be checked out by a spine doctor and at least get an X-ray to make sure everything is ok. I live in the Houston. TX area now. Any thoughts?

          • Amanda says:

            Hey Alva, would your health insurance cover seeing a bunch of surgeons who are experienced with harrington rods? Maybe you could see some (including Cunningham in NYC) and see who you get a good feeling about, and how they see the situation? Sending you healing energy!

      • Elissa Broadhurst says:

        Hi Lisa,
        I live in Australia and also have harrington rods. I had kyphosis. The first set went in in 1995. I also had a rib bone removed to use for the bone graft in my spine. The bone graft failed and the rods moved so I had another set placed in 1999. The drs had to use yet another rib bone for the bone graft. The harrington rods moved place and I had another set of rods again in that same year. I have had this set in for the last 16 years. I have been in constant pain and the rods protrude badly at the top of my back as they have become unhooked. I am currently waiting for a date for surgery for the Drs to attempt to remove the rods. The ct scan shows that a lot of the metal work is encased in bone. The drs will attempt to remove as much of the rods as possible. As there is so much bone growth around the rods, this will make the surgery take longer than normal. Around eight hours. The surgery will be done at the Royal Womens Hospital in Brisbane. It may be a good option to look into for yourself as you live in Australia. I will follow up in the next couple of months to let you know how my operation goes.

        • Amanda says:

          Elissa we are all sending you very healing energy for a wonderful outcome!! Thanks for reaching out to Lisa and all of us. I’ll make sure Lisa gets your note!!

    • Chris Briggs says:

      I’ve had 22 back surgeries, since 1973, one of first people to get harring ton rods, I had them out do to pain, then put rods back in then one broke an on an on. But I have flat back syndrome an just curious about the person who mentioned it. In 1995 they tried to fix mone in a 13 hour surgery, an they really screwed me up, drove pedicle screw through nerve in leg pain ever since. Just want to know how other person went. Thank you

      • Amanda says:

        You have had a tough time sounds like! There is someone who commented on what a great surgeon they saw in NY – a Dr. Cunningham at Hospital for Special
        Surgery. After removal surgery, she was back to teaching boot camp classes a month later. Maybe it’s worth it to see him. Always good to have great feedback from a fellow spinal fusion friend.

        I hope you feel better soon. Don’t give up hope!

      • Lorraine McIntyre says:

        Hi Chris, I live in Australia and had my Harrington rods put in my back in 1965. You have had a really bad time of it by the sounds of things. I have been in pain since 1997, and this has driven me almost nuts, almost. There is a site on web with a lot of information about the flat back and the harrington rods. It is called National Spinal foundation, I hope this will help you to be able to talk to people who are suffering like yourself, it has helped me but nothing can be done for me as the rods have sort of grown to my spine and to remove them is too dangerous. All the best Lorraine.

    • Beth says:

      I had Harrington rods implanted in 1976. Yes, we were guinea pigs. My surgeon was Dr. Ronald De Wald ~ Chicago. Did anyone else have him?
      Two years ago,(35 years later) I had 2 reconstructive spinal surgeries. Dr. Loren Jenkins… a Kaiser surgeon Doc did such a good!

      • Laurie Beard says:

        What is a Kaiser surgeon Doc? Is he in Chicago?

      • Caroline Ryan says:

        Wow-thank you for your post.

        I had a double curve of 52 and 48 degrees “S”curve and had surgery in June of 1978 when I was 13. It goes from about T2 to L4. I am now 50 and having serious problems- . I am new to Kaiser and looking for help . It was very helpful extremely to read your remarks . I will contact this doctor who helped you. Again I really want to convey how your words have given me hope as this is so debilitating.

      • Kathy Sing says:

        I had my scoliosis surgery in 1976 just before entering high school. I am 54 and still have my rod. I see to have a lot of lower back pain. I work out pretty consistently. But I seem to have shallow breathing capacity. Does anyone have that and feel it is related to the herrington rod? I have my surgery at Stanford in Palo Alto, Ca. Surgeon was Dr. Bleck.

        • Robin says:

          Hi Kathy,
          I also had scoliosis surgery done at Stanford in Palo Alto, CA. My surgeon was Dr. Leonard Rinsky.
          My surgery was done in 1977 when I was 12 years old. I was leaning to the left at 85 for my T’s and 59 for my S’s I just turned 51 years old and I have had nothing but pain my whole life. My surgery had to be rescheduled due to me catching the Russian Flu and he wouldn’t touch me until I was able to reach 100 pounds. We went in and he said he didn’t want to do my surgery so soon, but I was turning to the left so much that I was starting to squish my lungs. Anyway, so after 14 hours of surgery and a long recovery I made it. I also have a shallow breathing capacity, but for me it started when my neck was becoming immobile, (leaning my neck to the right is very limited) and my breathing compacity is worsening due to my neck leaning more and more towards the front. Maybe that is your case as well? I just wanted to write you, more so since we had our surgeries done at the same place….Finding these comments are new to me, but I’m very thankful for everyone who has shared their stories…Thankyou everyone

        • Robin says:

          One more thing, have you ever tried a TensUnit? I have had one since 1977 and it is soooo very helpful I don’t know how I would have survived without it!

        • Janice says:

          Dr. Black also did my surgery in 1973 in Palo Alto. I was 13 and had a 65 degree curve. It has been pretty good to me until my 40’s. Mostly neck, shoulder pain and now in my 50’s, right hip/leg pain. I have been diagnosed with restrictive lung disease. I also have been called a shallow breather. I feel my lung capacity is getting less as I age, as I feel I am naturally shrinking but the fusion/rod section of my spine isn’t degenerating as the vertebrae above and below the fusion. I have moderate cervical and lumber degenerative changes. Unfortunately I was diagnosed with RA and fibromyalgia in 2008. I would have to say the neck pain for me has been the toughest. Definitely have breathing issues, have been prescribed inhalers many times. I am unfortunately overweight and I think people assume the breathing problems are due to my weight, which I believed also, but not 100%.

      • Michelle says:

        Beth ,
        I too had Scoliosis / Harrington Rod Surgery in Chicago in 1981 however I can not remember the Doctors Name for sure.
        How are you feeling now?

  4. Thelma says:

    I had my Harrington rod placement with spinal fusion done back in 1982 at the age of 15. I was at a 55 degree curve and progressing at the the rate of 7 degree increase per year. I was told a brace was too late for me to use, that surgery will be needed. My inner organs was, on one level being pushed together, but on the other hand my left rib cage bones was separating. I was told the Harrington rod will never be coming out, that it was indeed a permanent thing. I was in some pain after the surgery. If I had to rate it on a 1-10 scale, with 10 be the highest, I would have to say a 2, unless it rained. They I would feel as though I was being shocked by electricity in the entire area where my Harrington rod is at, and it hurt. Still does this when its a bad thunderstorm. It wasn’t until I was about 1993, at the age of 27 years old, I began hurting more in my back, in the area where the top ending of the Harrington rod was at. I would take some Tylenol and rest for a while to relieve this pain. Then it got to where my complete back hurt bad, that it felt like my head was gonna pop off, which I haven’t felt this for a years, thank goodness. However back of my neck hurts to a level 1 all the time. As the years has went bye, my lower back began to hurt more, at a 10+ level. I had went to the ER so many times, that after awhile they began telling me, ” Take some Tylenol for the pain and see your family doctor soon” I think they thought I was seeking pain medication as a junkie, and not because I was truly needing something for pain honestly. So I suffer, cry and pray for the pain to just go away because Tylenol or any other over the counter medicine does not help any more. I went to my family doctor. He done some Scans and Xrays and for about a year, I would go get a predisone shot, which only help for about 2 months in easing the pain. Then he switched in providing me with a 3 month supply of Vicodin and Flexiril,(sorry I know I spelled that medication wrong) that I take when I am so much pain. I am at times in so much pain that I wouldn’t care if my legs, hips and lower pain was cut away immediately. My family doctor has spoken to me about reports of Harrington rod bending and breaking, which frightens me to death for my own self. I am worry about the corrosion I read that can happen on Harrington Rod and the health effects the corrosion can have on my body. I already suffer from bursitis in my right hip and upper right shoulder, ( same shoulder in which my hump is located at), arthritis in my hands, IBS, GERD, and Diverticulitis. I am constantly getting urinary infections due to unknown reasons and once in a while, I break out terribly with hives due to an unknown reason as well.. I am always in stomach pain and recently been told I have a bulging disc, located only millimeters away from the end of the Harrington rod and the possibility spinal stenosis going on, by a pain specialist, who just want to do epidural shot, which I heard from my sister who gets these shots herself, that will only make things worse and more painful. I am interested in just taking a deep breath and get this Harrington Rod removed. But it scares me to do so as well. What is the risk? How is this done? Is The Spinal Institute the place I go for such operation? I don’t want to wait until this Harrington Rod breaks and then be in a worse shape in NO doctor wanting to remove it. I don’t want to remain on pain medication for the rest of my life either. In removing the Harrington rod, would I be short again and back in the same nasty curve position? What is the chance of me becoming paralyzed during the operation in removing the Harrington Rod? Yeah, I am extremely nerves, scared and worried. If anyone can help me on this, please do. Because here I am soon to be 47 years old and I feel worse than a 90 year old in deep pain. Thanks.

    • Amanda says:

      I am so sorry to hear about how much you are suffering. Please do not worry about corrosion or breakage as this will only add to your stress. I am not clear on whether or not you think the pain is because of your rod. Does your gut tell you it’s from the rod? It sounds like you’ve been to doctors who just want to give you band-aids, not deal with the real issue. Can you travel to Dr. Boachie in New York City, at the Hospital for Special Surgery? He took the place of my surgeon and is supposedly very good. See what he says. If it’s the rod causing all the pain, ask about getting it out. I know that some people do this and are just fine. If it’s not the rod, then call my Egoscue therapist in CA, Paul Schell. I Skype with him and he has helped my body feel good. You do gentle exercises that increase muscular balance, right to left, back to front. I do an hour Menu of ecises every day, and my body is straightening out. Here is my Egoscue site – a post I did about Egoscue and scoliosis. Please let us know what you do. I am sure you can feel much much better!!

      • Thelma says:

        Hello Amanda,
        I am sorry it has been so long ago to which You heard no return response from be from your comment to me. I live in NE Indiana but I would be more then willing to travel to New York if it means 1. I could have this Harrington Rod removed safely 2. In removing the Harrington Rod, I am not shortening my life or adding additional health problems to me. I did check out The Hospital for Special Surgery site and was absolutely OVER JOYED to see they do accept my type of health insurance, which is Medicaid. Now I believe my next step is taking a deep breathe, and talk this over with my fiance. At least a conference with a this Hospital to get some answers would help me. I do believe, down in my gut, that many of health problems are from the Harrington Rod. I believe my back pain would go away indeed and that in itself would be WONNNNDEEEERRFULL! Before my back surgery for this Scoliosis, I wasn’t in half of the back pain as I am today. Sitting more that 10 minutes yes hurt to do. But at least I could so lay down and I was fine after 20 minutes. Thanks again, Amanda for this hospital. I will check into it more. I will bookmark this site too to keep you and everyone else updated.

        • Amanda says:

          Hi Thelma,

          That’s great they take your insurance!! Please do keep us posted on what you decide to do. We are all rooting for you!! See yourself feeling good and it will happen!

    • Lorraine says:

      Hi Thelma I just read this and it shocked me. I had Harrington rods place in my back in 1965 for a really bad double scoliosis. Since 1998 I have been in terrible pain and am currently on strong medication,. The specialists have told me that I cannot have my rods out due to the fact they have been in there for so long and everything you have described is exactly the same as myself even the pain up the top of the rods. I am fused and the rods start at T4 and go to L3. I am so sorry a lot of us are going through this. I have no appetite and feel tired and aching all the time. Terrible abolut the corrosion that has really scared me.


      • Thelma says:

        Hi Lorraine.
        I am sorry if my post cause you to become worried of corrosion or anything else for your health. BUT I was wondering if you condition has improved any since your last post or had gotten worse? I am thinking about contacting that Hospital Amanda had mention. I am still nervous and VERY scared of possible removal surgery but.. if this Hospital can rest me assure I am worried, scared and nervous for no reason, that they have indeed been doing removal for several years and everything goes well, then and MAYBE then I will relax and go for it. Please keep me update on how you are doing okay? You are in my prayers as well.

    • sheila says:

      I am 56 yrs. old and going thru exactly what you going thru. I am having the surgery done end of this year providing I can find a surgeon in my area who does it. I just need to find out all the information I can beforehand. Hopefully someone here will reply and help us.

    • charlene says:

      I am in Game and a Dr tom Morrison is doing my surgery. He has done them before.

    • Sharon says:

      WOW! I had my surgery in 1986, had 2 rods w/clamps screws. I grew 21/2 inches, well long story short I’m 51 and on disability. I’m on morphine, Norco, Neurontin besides 9 others for other problems. the 21/2 inches I gained I lost. Now I’m the height I was before surgery. I’m in a lot of pain, but still take care of my 9 yr old (a.d.h.d.) child ( his dad passed away), plus I take care of my 85 yr old mother. This past yr she had 3 surgeries in 7 months. 2 compressed vertebrae fractures(doc put cement like stuff inside her. Then her hip broke & had to go to rehab. she hated it, right away she said im getting home soon as possible. she was, the rehabilitation facility made a success story of her. (Sorry I,m so proud of her. U wouldn’t believe she stayed home 2-weeks before going hosp. my son & I took care of her.) ANYWAY SORRY…She is my inspiration!……….I’m having a real hard time, it’s like I can’t hold my back up to sit straight. (which I know I have bad posture, shoulders etc… But this is a lot worse than usual. I had surgery June 09,1986, July 04 I went outside to watch fireworks. My dumb butt sat in one of those lounge chairs w/ arms(the old ones). well I hurt myself, but didn’t want to say anything. I was in exscrusianing pain. my next appt. I think end of July. I popped one of my clamps loose, doc said that I was lucky it landed where it did, or I would be paralyzed. It lodged in a bone. But it could work it’s way up to the skin, then a doc would make small incision & take out. I also have anklosing spondylitis, R.A., bursitis, & sciatica on both sides. besides other problems. WELL I’M AFRAID!!…….Why did I loose the 21/2 inches I gained after surgery? Plus why was it exactly 21/2 inches? My pain specialist keep moving on me. This is my second dr. since the last one left me 9 months ago. This doc is well known & on TV. But 1st time I seen him he’s talking surgery. ?? Yes he has my records, but 1st visit? I feel like a number, been there 3x but only seen him once. Obviously my surgery was long time ago, I have 2 new pinched nerves in back down to my toes. Beside old ones across my chest & on 1 side & back. Now I have trouble breathing, I can’t take normal deep breaths & can’t exhale all the air out. So I have mucus on my lungs(didn’t get full report yet. My sister in law has same problem for diff reasons,& she gets carbon monoxide poisoning. I don”t know what to do? :( I’m all my son has & the way I feel I’m not sure how long I’ll be here. Then on TV a attorney says if u have a infused bone graft device to call. Which I’m more worried about me, I don’t know what to do? Contact the surgeon who did it? someone please reply! even just to talk, it’s nice to know other people have same problems & understand.

      • Amanda says:

        Hi Sharon,

        Sounds like you are having a rough time! I am sorry for that! Your lost height and inability to breathe deeply suggest to me at least that you should see a surgeon who is familiar with scoliosis spinal fusions! One commenter here really had a good experience with this group: She said that they were a great group of spine surgeons that specialize in scoliosis and other major spine deformities especially Dr. Chang & Dr. Crandall, and that there’s a lot of great info on the website.

        Also, there is someone who commented on what a great surgeon she saw in NY – a Dr. Cunningham at Hospital for Special
        Surgery. After removal surgery, she was back to teaching boot camp classes a month later. Maybe it’s worth it to see him. Always good to have great feedback from a fellow spinal fusion friend.

        I hope you feel better soon. Don’t give up hope! These are tough times but you will get through it!

    • Robin says:

      Hi Thelma,
      I’m sorry to hear about your pain, but at the same time your story is the same as mine. I to have had so much pain on my left side all the way down to my tippy toes that I would say the same thing as you, just cut it off. I take percocet, flexeril and Lyrica, but my Dr doesn’t seem to understand my feelings. I don’t want to be a druggie, but at the same time when I ask for more medicine she won’t give me any. May I ask you, have you ever tried a Toradol Shot? or even a TensUnit? When I do get the Toradol Shot, I get a double dose and that lasts for about 4 to 5 weeks. My TensUnit as I said in a different message sure does help. Maybe you should consider getting one as well….It’s a quick fix, but helps as well. I’m so sorry you are in so much pain, but again I am happy to hear that someone else feels the way that I do….Maybe we can talk and compare notes so we can help one another out!!! and NOT just us, but everyone who reads out stories. I also am soooo Thankful for Amanda sharing her story. I never have looked to see if anyone had stories, etc on scoliosis before. It’s great to see their are others who share as well. I hope you feel better and thankyou for sharing

  5. Kim says:

    I am 31 and had T1-T12 fused with 2 harrington rods placed to hold the fusion in 1999. I had a 65 degree curve and my ribs were detached from my spine on the right side. My right lung was at 50% use due to the squishing effect. My lower curve was 55 degrees and was not fused as I wanted children. I am in extreme pain daily since the surgery and it feels as though my right shoulder is going to fall off. I walk around most days with my either my arm in the air like I am doing the YMCA dance or holding my right breast firmly pressed into my ribcage. I am unable to wear a bra due to the location of the bone hooks they used, good thing I never needed one to begin with. The pain starts and is centered around the top of one of the rods. When I mention this to my doc he gives me drugs. I don’t want pills I want answers. I also have severe muscle spasms and can sit and watch muscles in my legs twitch up and down. I stopped seeking medical care in 2002 when doctors kept giving me so many drugs I couldn’t function as a human adult, get through an MRI without falling asleep and ruining the results or just met plain rude men who told me it was in my head and just recently went back to seek medical care. Now, when I move, I can feel something shifting around almost grinding that shouldn’t be. I get a funky bumpy rash and itch along my scar line all the time. I am allergic to many metals and can’t wear jewlery, why they thought metal rods were a good idea is beyond me. My lumbar region needs fused or something done with it as the curve is dramatically worse. I can’t stand straight and my hips dislocate when I sit and get up. I am a slight woman of 5ft tall and am only 125lbs so it’s not weight issues. If I could just know WHY I have this pain I think it would stop driving me so banana pants insane thinking I can yoga this feeling away, like they keep telling me I can, like yoga is a wonder drug. I would even go back to that horrible turtle shell brace if I knew that the metal was causing this and have it removed. I have 2 kids I would love to enjoy life with.

    • Amanda says:

      So sorry to hear this. Do you think you could call my Egoscue therapist (see above)? I bet he would have very helpful ideas for you, that could make you feel better relatively quickly in terms of the pain. But the rash and itch by the scar and your metal sensitivity really sound like you could have a problem with the rods themselves, possibly. Look at the MELISA testing. Those are the two things I would do. Please let us know what you find out. We are supporting you in this!!

      • Kim says:

        I will look into this Egoscue, as I have never heard of it, and contact your therapist to see what he can do. I will also check out this MELISA testing you speak of. I have done everything that was medically advised to me and more over the years I was absent of medical care and yet the pain/rash is still there and annoying as ever. Furthermore, I want no sympathy from anyone, just someone to tell me what is the problem and potential solution. I am far too young to be feeling like this.

    • Betty says:

      I have been ready many of these post as part of my own research. I feel your pain! There is nothing worse than being made to feel second class. I had my Harrington rod put in and fusion at the lumber in 1976. Have taken category 1 pain meds for Years! The pain is so bad that my doc says I may need to move onto stronger stuff….can’t make myself do it yet. I live in Vancouver BC Canada and I get to see the spinal surgeon next week. My family doc never heard of Flat Back either…he looked at me like I pulled it out of a hat or something. So I just wanted to also say Kim I first went to the specialist in 2006 who said I would need surgery eventually. In 2011 I took up HOT yoga..not that it was thing going to fix my back, but it allowed me to put if off for some time…it was the only excise I can do and allowed me to burn several calories to prevent wait gain. But eventually all things catch up…I now can’t do any form of exercise without lot os pain for several days. I have been also searching for anyone who had the rod removed…mine has been in for 38 years would love to have it removed! I remember when I was young they said that when I am older I will be staring at the sidewalk. I remember this like yesterday and at the time thought, what 80 year old doesn’t, joke on me I am only 52. If there are any other Canadians who have had surgery for flat back or anything to do with the Harrington rod please let me know.

      • Amanda says:

        Betty, I am sorry to hear of your pain. Maybe another Canadian will read this. I do hot yoga too and it really helps me. Do you know if the pain is due to the rod, or is it in the muscles? There are many things you could try…Let me know.

      • Linda says:

        Hi, I had my Harrington rods put in, at Sick Kids in Toronto, Ontario when I was 17, I am now 58. In October of 2014 after a visit to the ER for back pain an x ray showed that my narrower rod has broken near the bottom. I have been off work with sever pain since. My doctor has now sent my x rays to the third neurosurgeon. The first two looked at them and said they could not help me. Waiting for a response from the third. I am very nervous and would like to make sure I see a doctor that has dealt with this before. Especially a broken rod that has been in for so long. If anyone has had this done in Toronto, I would love to have a name of their doctor and hear about their experience. Thanks

        • Janet says:

          I was one of the first Herrington rod recipients at sick kids in Toronto at age 13 in1964.. Surgery by dr. John hall. Successful surgery and very athletic and did it all except of course gymnastics.
          Never did like the thought of all that metal and at the age of 20 was experiencing pain. Rods were successfully removed in Toronto . I have lead a normal regular life since. Am now 64.

          • Amanda says:

            Hi Janet. Thanks for commenting. I love to hear stories like your’s. Shows we all have different experiences. We learn from all of them.

          • Jessica says:

            Hi, I had two Harrington rods placed on my spine in 1993 at age 10. I also had hip and ribs removed for bone fusion. I was told I had a rare form of scoliosis as my curve was turned inward, pressing on my heart and lungs. My doctor said I had no choice but to have the surgery because of the way it was turning and its rate of progression. I was athletic as a child, before and after the surgery. I had pain from time to time as a teenager if I was on my feet too long, but other than that I was good. After having my son in 2009, the pain progressed and has continued to get increasingly worse. I went to the doctors a few years ago and was told that I had degenerative disk disease and arthritis. I can’t lay in the bed too long or in one place. I cannot sit down for too long and I cannot stand for too long. I have to cycle between them. I get real tired for no reason; which this concerns me with the talk of metal poisoning. I refuse to take pain medication. I only take Advil when I have Migraine headaches from time to time. I am so afraid of loosing my mobility. But I am also afraid of my curvature coming back if I were to have my rods removed.

            I had my Harrington rod surgery at Emory/Egleston Hospital in Atlanta, GA. Out of the four doctors my mother took me to in our area (65 miles south of ATL), none of them had ever seen a case like mine. I was lucky to even find someone that was familiar with my specific condition. I hope I am able to find someone knowledgeable in Harrington complications, after hearing that many have found it difficult to find doctors familiar with it.

          • Amanda says:

            Thank you Jessica for writing. There was a woman who commented that a Dr. Cunningham at the Hospital for Special Surgery was a very good doctor to see. I would guess that he has experience and could help you. He did her rod removal surgery. Not that that’s what you need, only that he may be worth looking into. Don’t worry about metal poisoning right now – I would find out what’s causing the pain. I am praying for you! Never give up!

          • Linette Holm says:

            Hello Janet,

            I like your story because most of these comments are from women who have had the surgery after 1980. I’m going to be 55 this year, I had 2 rods surgically fused in 1975. I lived my life the same and always had discomfort which through the years has escalated (flatback syndrome). I recently went to a University of Miami specialist who told me there is nothing that can be done until I am completely debilitated. Removing the rods is not an option it’s 3 x’s more painful than the first initial surgery and will result in more nerve damage and a higher risk of becoming a paraplegic. Rehabilitate doesn’t seem to help and the pain med’s are helpful but just temporary. I’m interested that they were able to remove your rods successfully. Lucky you, thank you for sharing.

          • Blair says:

            wow. 1964! i had harrington rod surgery in 1995 at Sick Kids too. I never knew rods could be removed? Can you bend your back? Thankfully I haven’t experience any pain but I do suffer from a lot of pulmonary issues.

      • Jennifer says:

        I have Scheuermann’s kyphosis (was 90 degrees) and had two rods put in in 1985, age 25, with part of 1 at the top removed in 1986 because a piece of rod and at least 1 clip ripped out in the hospital post-surgery- that bit of cut rod sticks out under the skin. Fusion material from hip bone, T2-L2 (T4-L2 on the other side). I am 55 with start of fibromyalgia, lots of other pains from car accident in 2012. I also now have a feeling of coldness across top of back. I don’t know if I could physically have the rods removed, but I am desperate for followup with a doctor who knows about post-fusion/rod issues, including testing for corrosion and ligament/tendon checkup. I am in Mississauga, near Toronto, Ontario. Does anybody know a doctor within a couple of hours of me in Canada with rod and fusion followup experience that is willing to look at patients who aren’t in imminent need of back surgery? Even a doctor who knows how to order the xrays in the correct body position would be helpful. Thanks and sorry for everyone who is having problems, Jen.

        • Amanda says:

          Thanks Jen for your comment. Perhaps someone here will be able to answer. I do know of Dr. Cunningham in NYC who is supposed to be good with a case like yours. Plus MELISA to test for allergies, which would be helpful to know about. I am sending you healing energy and love to feel good again.

  6. Lori says:

    Harrington rod implant with eight vertebral lumbar fusions 1975. No problems til I turned 30. I had daily pain but, it was at a tolerable level. About once per year, I would be down flat on my back as the pain would increase. I would take pain meds daily during these periods. As I became accustomed to my new level of pain, I weaned off my prescription pain meds. As the years went by, these bouts increased from once to twice per year, then nearing my 40s even more frequently. My level of pain has increased at an exponential rate over the last three and a half years. I am now 52 and in constant pain. I am taking roughly 10x the amount of pain medications I was at the start. My spine is now degenerating and am told am developing spinal stenosis. It is hoped that eventually my vertebrae will fuse. Right nowyou can hear them cracking and crunching against each other; walking or sitting. I have tremendous spasms when ai try to relax. My arms and legs jump all over rather violently at times. I cannot walk more than 50 feet. Most of the time I use a cane, sometimes crutches and always use an electric sit-on chair when shopping. I also have been treated for GERD for the past 25 years. 7 years ago, I had surgery on my right shoulder (the one that hunches forward) because the bones were rubbing together. That pain came on suddenly and grew quickly and was unresponsive to cortisone.
    I have heard of those who have had the rod removed but, after a long time, the bones inthe spine may possibly grow overthe rod making this type of removal impossible. I’m sure I cfall into this category.
    Interesting note about the metallic breakdown. I’ve always wondered if my GERD wasn’t due to something else, as I get no relief despute diligent efforts to adhere to very restricted diet. I also seem highly sensitive to magnesium. Another strange anomally; my fiance is a computer tech/electrical tech: one day he was goofing around with a meter that measures conductivity and he “tested me”. My reading was way off of what most people’s would be!
    I also have speculated as to why they now use plastic rods. Hmmm….
    For now, I am at the maximum allowed dosage of this particular medication. I know some day soon, I will have to move up to the next tier of pain meds. I haveto nap to get through the day. I suffer severe stomach aches taking these pills. It really sucks. I am now to the point I have more bad days than good. I am not always good company as sometimes the pain makes me cranky. It is all I can do to make it through the day. Just life maintenance activities: cooking, cleaning, laundry and grocery shopping. Thats it. Because it hurts the whole time and my pain slows me down. Things I used to be able to get done in a day takes me a week!
    Look, dont feel sorry for me. If I let myself dwell on how my ol body is falling apart I feel plenty sorry for myself enough for all of us. I keep my mind occupied with puzzles and games. I do gardening on a small scale and help out my elderly parents when I am able. Things like that to keep my brain sharp and give me a sense of fulfillment. I just wanted to post here what MY version of scoliosis is like. Perhaps this info will be of help to someone. Hopefully, yours, Merry Reader, is a different story.

    • Amanda says:

      I am so sorry to hear about your daily struggle and pain. As you said, it helps a lot to just keep going, to know there are better days ahead. My suggestion is to call Paul Schell, who is an Egoscue therapist in Santa Monica. He has helped me very much with postural and pain issues. Now my 9 year old son is doing Egoscue e-cises every night and the difference in his right-side leaning is amazing to see, after only 20 days. You skype with an Egoscue therapist who then emails you a menu of exercises to do each day. I know we tend to think ‘That won’t help, I have a rod and fusion!’ But I guarantee you, it can help a lot.

      Paul is here: Please let us know if it helps you.

    • Amanda says:

      Also, for the GERD, fermented foods can be life savers. Check out more information at There’s a book available that describes recovering from GERD and autoimmune conditions with diet.

  7. Jennifer says:

    I had a double spinal fusion done with 2 Harrington rods placed in 1994 I was 18. I wore back braces for 5 years with no help prior to my surgery. I am now 37 and would consider removing my rods since they have no purpose and are broken in 2 places. I now have degenerated discs below my fusion and believe to be developing flat back. I’ve done physical therapy and facet joint injections. I start acupuncture in a couple of weeks. My daughters dr. Has given me some verbal tips to help and hopefully I can afford to be his patient soon ( he’s an out of network provider my insurance doesn’t cover) my daughter is 8 and I had her diagnosed a year ago. We travel a 10 hour trip to get her to her dr every other month. He is a clear institute certified chiropractor. And was able to knock my daughters 16 degree curve down to a 4 in just a couple weeks time. And has kept it stable ever since. I also see my chiropractor weekly just to keep my pain somewhat better. I refuse to take daily pain meds and to get my stenosis fused. I also get migraines that I assume might be due to my scoliosis? But not positive. I really try to stay away from medical doctors as much as I can. If rather go the more natural path. But it was suggested to me to get a blood test to check for metal toxins since my rods are broken and of course that recommendation didn’t come from a medical doctor.

    • Amanda says:

      Thank you for your comment. I am glad your daughter is doing so well. I am sorry to hear about your rods being broken. Can you feel that they’re broken? Can you try Egoscue? That has helped me a lot. I stay away from conventional medical doctors too, as they are so limited in what they can do for chronic conditions. I hadn’t heard of clear institute chiropractic before. I will check it out. Egoscue has improved my son’s tight hip. I do send you wishes for feeling good.

  8. Gina says:

    I had a spinal fusion with Harrington Rod at age 13 in 1983. Long recovery, but I felt relatively “normal” except for a few bouts with some bursitis where the hooks are, until I had my children…torture. Pregnancy changed my pain level and I was unable to have normal vaginal births due to the inflexibility of the rod and a persistent tilted coccyx post surgery. Sadly, I was also not able to have a spinal or epidural due to bone grafting, scarring, and cementing. So, both children required mom to be out and mechanically ventilated to be cut from my body-one emergently and one scheduled ( I am a nurse practitioner, so forgive the medical lingo!) Anyway, I was wondering how pregnancies and deliveries went for anyone else? This was never discussed with me at the time and I’m wondering if they even considered it. I also have a lot of herniated and degenerated discs both above and below the fusion and every year my pain level and ability to do the activities I love to do (gardening, etc.) get worse and worse. I try not to take medications, as I am only 44 and hopefully have a long life ahead of me that I don’t want to depend on meds, but I can tell you I live with such a degree of pain–worse in the morning-it frightens me. The flat back syndrome that I am reading about has never been diagnosed in me, but it sounds like what is happening. I’ve tried yoga and pilates to loosen up, but it just doesn’t work. Any other suggestions?

    • Amanda says:

      I too was completely put out for the birth of my son. I started in a midwife’s, wouldn’t dilate for many hours, then went to hospital. They couldn’t use an epidural for me because of my spinal fusion, just like you. I was so bummed and upset about it, for so long. Now I accept it, and am very grateful for my amazing son. So sorry about your pain. Again, I would recommend Egoscue therapy. Email me if you need more info. A good therapist like Paul Schell will tell you why and how your posture is off and what to do about it, even with a rod. Please keep us posted.

      • Kendra says:

        I have 2 harrington rods top to bottom to correct a double curve. The surgery was in 1987. I have had 2 children, both at home with a midwife, no problems at all. Prior to the birth of my second child I visited the hospital to determine where my fusion was so that if there was an emergency c-section the doc’s would have it all on file and we could do an epidural. Thankfully not needed. I have been almost entirely pain free for the 28 years since surgery with just 4 episodes of a suspected cracked fusion. The 4th episode (on going currently) will be investigate by the Dr in about a month. I’m hoping it will heal before the appointment!

    • Lorraine says:

      I had two children without a problem, I am fused from T4 to L3. with 2 Harrington rods and heaps of pain now 62 years of age.

    • Thelma says:

      I had 4 pregnancies and 3 births. First birth was vaginally and no problem. 2nd and 3rd was C section because of fetal stress and other health issue with my unborn child, Had nothing to do with the Harrington Rod with spinal fusion. 4th one I miscarried at 1 month. During the pregnancy my back felt wonderful.. Both C sections I was out like a light. Doc said he didnt want to do a epidermal because of the my spin was not “healthy and normal”. Personally, I wouldnt had done the epidermal anyways. I heard spinal fluids can be lost and can cause problems later.

    • jill says:

      I was diagnosed with flat back and understand your pain. It is hard to diagnose only because most surgeons have never heard of it. You need to see an orthopedic spinal surgeon who specializes in revision or salvage surgeries. The only relief I could get in the morning (worst pain and stiffness) was to walk slowly on a treadmill. I would walk for at least 10 minutes every morning. It would take the first 5 minutes just to stretch out enough to be standing straight up. Then I would walk the same in the evening. Don’t run, just walk slowly. I am currently 4 months post op for spinal revision surgery. I had the bottom portion of my rods removed and replaced with newer technology. It was the best thing I’ve ever done. It was a very hard road, but totally worth it for me to get my life back.

  9. Danita Jones says:

    I had spinal fusion surgery in 1987 at the Mayo Clinic. 12 vertebrae Are fused. I had seen my grandmother and her brothers suffer from severe kyphosis and scoliosis, it has made me accept the fusion easier. I went about 16 years with no issues. The following really helps:

    Massages every three weeks. I found a massage therapist who worked as a physical therapist in Poland before coming to the states. Ironically, she worked on the floor where they did spinal fusions and worked with the patients before and after surgery. She works at a place that offers memberships so it is cheaper.

    Glucosamine Chondrotin. Take daily and also take with a good fish oil. This helps with absorption of the glucosamine Chondrotin.

    Turmeric and bromelin- both natural anti-inflammatory supplements

    Presciption-Naprolyn – it is a prescription naproxen, anti-inflammatory,but is time released and seems to help me the most.

    I have been to one physical therapist who is a manipulative physical therapy that really helped. I too hve the most pain at the start of the rods above my neck. Sometimes I could not move my neck. He would take great time in finding the vertebrae then manipulating the same one or popping.

    If I have pain in the future I will do accupunture. Hope this helps.

  10. Rosie Dodd says:

    Hi i had the harrington rod surgery in 2008 when i was 15 i had a really active life and a hard working life up until now my pain started in my lower back.. and now has moved between my shoulder blades it is excrutiating at times but i take tramadol to ease it.. my specialist has done x-rays and mri scans which have come back that everything seems fine it is really affecting my day to day life and getting comfortable is such an effort.. any ideas whats going on ??

    • Amanda says:

      Do you sense that the pain is because of the rod? Sometimes we have an inner feeling about things even though we can’t tell intellectually. Maybe it’s from your body compensating for the lack of mobility due to the fusion. I have walked a bit differently ever since having the surgery 30 years ago because my spine doesn’t move so I sort of walk without moving my hips like others do. If it feels like compensatory pain, maybe try my Egoscue therapist reco, Paul. Good luck and please keep us posted.

  11. Rosie Dodd says:

    I think there is something wrong just nothing to prove it i have had physiotherapy but it doesnt seem to help. Im at the point now where i just want them out in the hope the pain will go away as ive been dealing with it for 8 monthsnow.
    Thankyou for getting back to me.

  12. Renee Schwartz says:

    My sister had a spinal fusion w/rods and screws put into her back due to a fall where she broke her vertebra three years ago this August. She was in one of NYC’s best hospitals and supposedly had one of the top neurosurgeons the chief of surgery. She was in the hospital for 7 months. She nearly died due to mistakes made. A fluid leak due to no drains, recementing for cracks, a wrong screw put in that fell out. She was operated on 4 times. She is now homebound because of severe constant pain, cannot walk or stand up sraight and must walk with a walker. She is very hunched over also. She was 5’9″ tall and now she is 5’6″. He really ruined her. We have been to so many doctors, pain management. physical therapy to no avail. It seems no one wants to help her here. We found one doctor who swore to her that he can and will help her. He sent her for all kinds of tests and when he got the results back called her up and cancelled her appointment and told her he cannot help her. This was done by his nurse practioner. Is there anyone out there in New York that can and will help her? We are all so devastated over this we are totally depressed. All we get from the doctors that we go to is see a psychiatrist and go to pain management. I know that is not the answer for her. We are so frustrated and miserable over her suffering and cannot get any help from anyone we do not know what to do for her. Please if anyone or any doctor reads this and can help her please contact me at She is now 70 years old. She is healthy in every respect except for this horrible condition he left her in. Thank you very much.

    • Amanda says:

      I am so sorry to hear that. I hear good things about Dr. Boachie at Hospital for Special Surgery in NYC. He replaced the surgeon who did my surgery in 1984. As for pain, again I recommend Paul Schell, an Egoscue therapist. Maybe others will have some more ideas. But I’ve learned you have to keep going, see people in various fields, even if you think they can’t help. They might be able to recommend someone who can. I wish you and your sister the best of luck and I am praying for you.

    • Renee Schwartz says:

      I contacted the Hospital for Special Surgery and Dr. Boachie. First of all, HSS does not take my coverage and neither does Dr. Boachie who also does not work with rods and screws. I am so depressed and feel like my life is over the way that it was before this butcher surgeon ruined me. I had an appointment with another top orthopedic surgeon two weeks ago and he and his nurse practioner both told me they could definitely help me. I took all kinds of tests and saw a neurologist at the request of the doctor. Then two days before my next appointment after he got all the results back called me and told me not to come in because he could not help me. Not saying another word from his nurse practioner or giving me a referral he “just threw me away”. He lifted my spirts so high and then he just knocked them down to the ground. I have not had any help from any doctor that I have seen. I called “egoscure” and the price of a visit is just way beyond my means. I just do not know what to do anymore. I have an appointment with another orthopedic surgeon who is also a “revision specialist” on July 8th. I am terrified of going to him for fear of him not helping me either. I am beginning to think they can help me but won’t because they do not want to step on another doctors toes. I was also told this by a receptionist in a highly regarded doctors office. Why would a competent doctor get my hopes up so high only to tear them down. I am and so is my family so depressed over this. Please if there is anyone out there who can offer some help I would sincerely appreciate it.

      • Amanda says:

        I really feel for you. I can offer you hope though. I hear how upset you are, and understandably so. But you are surely not ‘ruined’. Here’s what I have learned through the hard times: there is always a way to feel better. You may not know what form that will take or how it will happen. I encourage you to just see yourself in your mind’s eye, feeling good, pain-free, doing things you want to do. The universe will make it happen for you, somehow, even if you don’t have a clue how it could. I hear your pain and anxiety. You could take time each day to meditate, to breathe, to know that all will be alright. I know this must sound ridiculous to someone who is going through such a serious ordeal, but it works. Try not to be terrified of going to another revision specialist, as this may bring on something scary! The law of attraction is always in effect. See the appointment going well, see the doctor as kind and helpful. See yourself as calm. Forgive me if you think I’m belittling your situation. I assure you I am not. I am praying for you! You will be okay.

        An Egoscue appointment should only be $99 for a Skype consult. This is what I pay.

        Keep us posted and good luck with the new doctor.

      • jill says:

         it sounds like you have exactly what I have. It is called flat back syndrome. I had my rods placed in 1988 and had to have them partially removed 4 months ago. I was diagnosed with flat back syndrome last year and was in constant pain. I could not stand straight or stand up for long periods of time. My rods were in tact but the lower portion needed to be removed, my fusion broken, and my back reshaped and refused with new hardware That had a curve to it. The 1st few months were very hard, but they gave me plenty of pain meds. I was very weak for a long time. My surgery was jan 18th And just this week I went to my first tigers game and a movie a few days later. It was more that I should have done and caused a lot of pain. I still have a very long way to go. It was totally worth it. I would do it all over again in a heartbeat. Finding a surgeon that does salvage surgeries and is familiar with flat back syndrome was the key. Most regular spinal surgeons do not know what it is and can not fix it. It is a very difficult surgery on your body and takes a long time to heal. I was 12 for my first surgery and 38 for this one. This was so much harder for me. But again, totally worth it. The pain I feel now is not the same as the constant pain I was in before the surgery. This is post op healing pain. Please look up the condition and you will see that it describes what you are going through. I walked leaning forward, and the condition will never get better. You will continue to get worse untill you are walking looking at the ground.

        • sheila says:


          Mu email is You sound just like me. Only I am struggling to male a decision but it looks like I am heading for the PSO surgery end of this year. Please feel free to email me. Did you have to give blood beforehand? How long were you in the hospital? Any surgery or recovery hints you can give me , I would greatly appreciate. Thanks

  13. Renee Schwartz says:

    I feel hopeless. I am 70 years old now and worried about what is going to happen to me in the future. I am sure you must know what I am talking about although I do not know how old you are and what you went through.

    I live on the 4th floor of a non-elevator building and it is just so painful walking up although I do have help I just stay indoors all the tiime until I have to see a doctor and get more depressesd when they tell me they cannot help me.

    I contacted Dr. Boachie of HSS and his nurse told me they do not take my insurance coverage which is Emblem GHI/Medicare. I was on Dr. Boachie’s website and it says it does take my coverage. His nurse aso told me he cannot help me. He is listed as a renowned Orthopedic Surgeon recommended to me by you and the doctor that decided he cannot help me either after promising me the moon and then knocking me down again. I just fo not know what to do. I go to doctor after doctor and no one is willing to help me. As I said before and was told by a nurse in another top doctor’s office they can help but do not want to because they do not want to step on another doctor’s toes. I called Dr. Boachie’s office again today and left a message.

  14. stacy says:

    Hi my name is Stacy and I had Harrington rods put in when I was 16 due to Kyphosis. I had a 96% curvature to my spin and now I have a 52%. Back in December 2012 I fell down my stairs and ever since I have been having pain in my mid and lower back plus in my right side. There are times that I can not stand up straight and I have problems standing after sitting for a few. I have has x-rays done and it shows that the rods are fine and the meds that I am on are not helping much so now I am having a Myelogram done on the 12th of Aug and I am being referred to a orth. Everyone here has issues with scoliosis, does anyone here have kyphosis

    • Amanda says:

      Keep seeing people and someone will help. This is what I do. I currently have a dental issue that is perplexing people, so I am just seeing person after person, having faith that I will get the help I need. Please let us know what your myelogram shows. Kyphosis is just one type/angle of spinal curvature, as is scoliosis. Most of the time doctors do not know what causes these curves. Some people think that heavy metals like mercury may play a role. I am thinking that may be true for me, as my mother had plentiful amalgams when she was pregnant with me.

      • Kelly Johnson says:

        I had a Harrington rod & hip bone fused 2 my spine @ St Vimcent’s hospital in Indianapolis in 1978 2 days b4 the blizzard on Jan 24th. The Orthopedic Surgeon, Dr. Rapp was veey good. I never had much trouble. I work out a lot. At age 41, i had a 1/2 in height loss. I recently went 2. a Orthapedic Surgeon & talked w/ the PA. I had an xray done on Fri & found out my cuevature is 34 deg & it was 17 deg after my aurgery. It was 72 deg b4 my surgery. It worries me that it went feom 28 deg 2 44 deg. I didn’t rhink this could happen. I”m going 2 c a Physical Therapist soon & in 3 mos have my back xrayed again 2 c if it has progressed.

        • Kelly Johnson says:

          I meant that my curvature was 27 deg b4 my surgery & now it’s 44 deg. That scares me that so many ppl have pain & that ur spine can curve after a rod put in. I didn’t think that was poss. It also scares me that ur rod can corrode. I never was told i had 2 much nickel or metal in my ueine. I haven’t been sick yet.

          • Lorraine says:

            I cannot see how your spine can continue curving Kellie after you have had Harrington rods in your back and a fusion. You must get your back Xrayd and go to a good scoliosis specialist, just to be on the safe side.

        • Elizabeth says:

          I had scoliosis surgery on my thoracic spine in1979 with two harrinton rods hooked on one side straight on the other with bone graft from my left hip. They used a body cast made of plaster which I had to wear for 9 months. In 2011 I had fusion on my lumber spine my sergon cut the end of one of the harrinton rod and attempted to connected the new hardware to the old but it broke as a result the spot where he cut the old rod is now pushing out causing me to hunch over it is poking through my skin. Has anyone had this problem before? I am in a lot of pain burning and stabing. I went to the Baylor scoliosis clinic in Plano TX he said I will need revision surgery in the near future.

          • Amanda says:

            Sorry to hear about this Elizabeth. Have you found anything else out yet since you wrote? Did you get the 2011 fusion due to pain? Sounds like a purely hardware issue. Maybe the bone is fused enough so that you can have the metal ware taken out?

  15. christine schultz says:

    I am 45 years old, had the harrington rod put in at 16. In the nearly 30 years, I have never had ANY issues. Gave birth to 2 sons. Bungee jumped, rode motorcycles, ski, horseback riding, sky diving, weight lifting, etc. I remember my mother telling me that I would be restricted for my entire life…in fear of my rod “popping”. I paid no mind to that, and chose to take the chance and live life (she was quite over-protective so I chose to disregard her opinion). The ONLY effect the surgery has ever had on me is the scar on my hip causing me to feel self-conscience in a bathing suit or underwear. They took bone fragments from my hip to fuse the rod to my spine. That scar is uglier and deeper than the one going down my back. Oh…and I am careful not to bend over in a form fitting t-shirt when hubby is around, because there is a bump that forms in my right shoulder blade area when I do. So…purely cosmetic issues is all I have experienced.

    • Carol says:

      Christine, you sound eerily familiar to me& my situation. My mother tried to protect me and dissuade me from all that life had to offer. I blew her away and went on to do all the things she said I never would do or could do. I went to work one year after I had my surgery and had a cool series of summer jobs, I went on to graduate from community college and met all kinds of people and men who became my friends and lovers. I, married twice and had twins at age 40 with my second husband,. I had my surgery when I was 15. I have gone on to become a body builder, fly a plane, walk the Grand Canyon- with my two children. Went to Las Vegas and only spent a dollar for gambling. White water rafted in the many park out in West. . Walked Death Valley in 126 degree Heat. ( pant, pant) I have performed lIve readings on the radio in Miami and read poetry in Miami, ( lots of it my own). I am now fairly settled in my ways, but am always serious all the time. I am now divorced but have dates. I am in my mid fifties. The only consequence of my surgery I have now is like, you, the ugly and slug shaped scar over my hip. Will it ever go away? I only wear one piece bathing, suits, now. My scapula ( shoulder blade) has a prominent hump on it, too.
      I have NOT had a moment of back pain since two weeks after the surgery, but my legs get tired out after standing on them for six hours at a time. I have broken many other bones but in time they healed
      I do have long standing asthma due to the curve in my spine that affected my ribs and breathing, but it is well controlled with a maintence inhaler. I have not seen an orthopedic doctor since 2007 ( and that was for a broken femur.)

      Lots of words, we all have long stories to tell. I replied to your response because it was most like the one I would have given. We adopt , improvise and overcome. Or in C language We FIGHT, WE ENDURE. WE CONCQUER.

      Thanks for reading this long message.

      • Daisy says:

        Hi where are you in Miami? Did you have your surgery there? I had my Harrington rods put in in1992, and until now at 40, had minimal discomfort. But now getting what sounds like this flat back syndrome pain.

    • Kendra says:

      This is a similar story to mine. Double rods in 1987 and very few problems. I surf, kite surf, run, mountain bike, ski, rock climb and had 2 children without pain medication. In 28 years i have had 4 episodes of a suspected hairline crack in a fusion. They have so far healed up fine with just a week or so of rest. I’m considering getting the rods out to avoid these sporadic rest periods and futrue problems but not sure if that would maybe cause more problems in the end. The rods have been a part of my back for along time and I kind of like them there. I assumed they would be there forever and I like that they supported my curving spine when it needed it. I worry that without the support my back will crack more. Dr’s apt in 6 weeks so hopefully will get enough information to make the right decision.

    • Blair says:

      I also have a ugly looking scar from my hip. It’s nothing like the huge scar from the Harrington insertion. I’ve always wonder why the scar from my hip is so ugly. It’s like the doctor didn’t stitch it up properly or something?

  16. Jackie says:

    I had a braces and casts and finally surgery. A nurse turned me and popped the rod. I had surgery again to re install the rod. I was in bed in a cast for a year. After the cast they gave me a corset and I could sit for 15 minutes. I could stand forever. I play golf. I swim. I ride horses. I have no problems! Thank the Lord!

  17. Joanna Niarchos says:

    I had scoliosis surgery in 1986 at Sick Kids Hospital in Toronto by Dr. Bobechko (doctor who invented new clamps used with harrington rods). I have never had any problems and have always had a very active lifestyle. I do get pain with damp weather and sometimes find it difficult to stand up straight when I am lying flat on my back, however only minor issues in comparison to what I have read being experienced from others. I gave natural birth to 3 healthy kids as I was unable to get the epidural due to scar tissue. My 12 yr. old daughter was recently diagnosed with scoliosis and although I was very upset I am happy to see that so many resources are now available to her that had not been available to me growing up. I was never given a brace option. I was watched by Dr. Bobechko until my curve was over 50 degrees and then was sent for surgery. My daughter is now in a Rigaud-Cheneau brace, invented by a Spanish doctor that has shown significant improvements. My daugher had her brace made at Sick Kids Hospital Toronto by an orthotist there however sadly most ortho surgeons in Canada still do not support the Rigaud-Cheneau as they are behind in bracing options by about 10 yrs. and only still impose outdated braces such as the Boston or the Charleston. Clearly the focus is not on preventative measures. My daughter is also doing Schroth therapy. I am confident that with these two techniques she will be able to avoid surgery. I recommend others to look into these options as they are working for many others that I have met at the scoliosis support group here in Ottawa, Canada ( As for me, I had a bad fall recently and requested xrays. I found out that one of my rods is broken (right side). Problem is they cannot tell me if the rod was broken due to recent fall or has been broken for years. I have been really nervous lately due to knowing this. I don’t have any pain in my back , however I am experiencing shooting pains in my right leg and deep in my right glute muscles. However I don’t know fi this is a result of my fall or of my broken rod. I also don’t know if I can carry on my normal active routine or if something I do will dislodge the rod and cause me irreversible complications. I am hoping to see a doctor who can give me some answers but grateful if anyone can share any similar stories or experience with broken rods. I am not keen on surgery at 41yrs. I always found it interesting that there was never any follow-up within the first few years of my surgery to ensure rods were properly fused. I am just discovering now how many probems people have with rods in general and it worries me as prior to discovering my broken rod had read or thought very little of this. Joanna

    • Heather McGarry says:

      I also had Harrington rods put in by Dr. Bobechko in Toronto, I was 15 and have been told that I have degenerated discs in my back and neck and arthritis starting. My hook at the bottom also broke off and is sitting by my tailbone. I get pain shots every 3 months in lower back and neck. I did hear that now they remove the rods after so long, I haven’t talked to any Drs about removing them if possible but am thinking about it. I was the first person to have this procedure done in Canada.

  18. Verena Taylor says:

    I am 36 years old. I had scoliosis surgery in 1989. At age 12.Since then I’ve had 5 kids normally. I currently work as a CNA 1, CNA 2, and also Med Tech. I been having the worst pain ever. I can not work now due to the pain I have while standing and sitting for long periods. I can’t walk for long periods. My husband helps me bath and do all the cooking. I been denied disability 5 times I currently have chronic pain, osteoporosis, arthritis, dengenrative disease. I can barely get out the bed in the mornings. Any Suggestions.

    • Amanda says:

      Sorry to hear that. Has there been a doctor you’ve seen who has been helpful, besides giving diagnosis? I am also learning that illness, including scoliosis, needs to be looked at from three angles: diet, exercise, and emotions. I read that scoliosis could mean not feeling supported as you were growing up. Can you look into Egoscue therapy?

  19. Gina says:

    I have to say I have found another solution that gives me some relief as I do not want to take meds and am losing flexibility as I age. I am a nurse practitioner who works for an osteopath–he has routinely adjusted above my fusion, but is unable to below due to the rod and hooks, etc. He and I discussed some options and we did a trial of trigger point injections along the muscle spasms in my low back and sacrum area with a small amount of dexamethsone. Within 24 hours I had tremendous relief on the left side of my low back. Right is still uncomfortable, but I am resigned to the fact that I will always have some degree of back/if I can get some relief, it’s worth it. As he is a my boss and friend, he was willing to try to help-be mindful that many other physicians don’t want to get involved in someone else’s mess lol. If you are able to find an osteopath/orthopedist who would be willing to try, i can honestly say it is the first real relief I have had in a decade.

    • Amanda says:

      Great news Gina! So glad you have relief now. I have heard a lot about trigger point injections but don’t know much about them. Thank you so much for sharing hope with readers!

  20. Michelle says:

    I developed scoliosis at the age of 2, secondary to radiation therapy for a Wilm’s Tumor. I wore a brace for 12 years and finally had fusion, with Harrington Rods, at the age of 17. I have always had back pain, but am certain it is more due to the damage to my back muscles than due to the fusion. I have recently started doing hot yoga and have experienced an marked decrease in the amount of pain. If clearance is given from your own physician, I highly recommend it. It certainly has not eliminated my pain; I feel this is a lifelong issue with which I will always have to deal. But the fact that I am a 37-year cancer survivor makes dealing with a few aches and pains everyday seem manageable!

    The one issue I am facing is due to the fact that I am thin and the rods are visible through my skin. I have a pinching of the skin at times when I lean back against a hard surface. Has anyone experienced this? If so, have you found a solution?

    • Amanda says:

      Yea for hot yoga! I love hot yoga. So much so that I am in the middle of a training to teach it. I am so happy that it makes you feel better. It does me too. I would be very stiff and less flexible than I am now if I didn’t do yoga. People who are beginners can start really slow and work up day by day, and it really makes a difference.

      I don’t think I have pinching but I have never liked sitting in hard straight backed chairs because of the touching of my lower rod hook through the skin to the chair. And during yoga depending on how hard the floor is I sometimes need a towel between me and the floor in addition to the mat. So I know what you mean. Maybe others will comment.

  21. Lorraine says:

    I am so glad you are feeling better Gina. I have had the trigger point injections and am afraid they did not help. Then again my operation was in 1965 and I am fused from T4 to L3. Amanda it would be impossible for me to any form of exercise at all as due to the rods and fusion I cannot even bend at the waist and the pain I am in would definately stop me, would be good for those who have not got the rods or the fusion.

    • Amanda says:

      It wouldn’t be exercise like how you’re thinking…more like positions of rest where the body can relax compensating muscles and much more. Check out Pete Egoscues’ books.

    • sharon says:

      I have had 5 back surgeries (looking at a 6th) with the original Harrington rods put in 1977. My orthopedic is fixing one problem at a time, all in the last 10 years. I am 52 yrs old and in chronic pain. I am just writing this to let you know that exercise is always possible. I am still in pain but it helps with flexibility and the general condition of my mind. I am disable now and on plenty of meds but I need to exercise. I found a GREAT physical therapist who has an office at the gym. He gives me routines to do without him. The experience has helped me tremendously. I am resigned to the pain but I need to keep myself busy. The gym can also be a very sociable place which is good for your soul. Don’t ever give up, do what you can with what you have been given. I only wish I had someone near me to talk to or share experiences. Good luck to you.

      • Amanda says:

        Hi Sharon,

        Thanks for giving us your story. Hang in there. I am so glad you found a great pt to work with. They and others, like Egoscue therapists, can work wonders. Perhaps readers who have commented on this post will use your email above to make contact. It is so good to find others in similar situations! Everyone, Sharon’s email is Thanks so much for writing.

  22. Debbie says:

    I am 56 years old. I had my surgery with spinal fusion and Harrington Rods in 1980. Due to scoliosis. I was doing fine well into my 40s. For the last 7 years I have had terrible migraines at least 3 times per week. I am taking Treximet for that. In the past few years I have been having terrible pain and numbness in my left lower back, left hip, and left leg. It keeps me awake at night. I have what I would call weird posture. I do not stand up straight. I kind of lean forward from the waist.
    I wish I could come up with a good way to get rid of the hip and leg pain and the migraines. Taking meds have been the norm and it is not working.

    • Amanda says:

      Call my Egoscue therapist, Paul Schell in L.A.! You guys can skype and I bet he can help you. Lots of things can go awry when one’s posture is a bit wonky. Check out some of Pete Egoscues’ books to learn how this happens. Good luck and let us know how you do.

  23. Jackie says:

    My 16 year old just had removal surgery of her two spinal rods, 14 screws and a bracket we are 3 weeks out of surgery she is now on antibiotics and probiotics due to an infection that formed in her bones from the rod corrosion for a period of up to 6 months. Along with this she can not be in direct sunlight and has nausea medicine. We have been told that this infection has no cure they can only contain it

    • Amanda says:

      I am sure there is a cure. The body knows how to heal itself, you just have to figure out how to give it what it needs so it can do that. I know that colloidal silver is very powerful. Here is a site that looks cheesy but is about someone who had a rare but serious hidden bone infection in her foot called ulcerative osteomylitis. Colloidal silver cured it.

      I finally bought a generator and make my own to save a lot of money. It is good to have on hand.

      Have you seen a naturopath for her situation?

    • Milly says:

      what type of rod did she have…harrington rods have not been used for years if I am correct

  24. Kimat says:

    Hi there. Its nice to no that Im not alone. I had a spinal fusion from T2-L4 in 1992 for my scoliosis and I now live in terrible pain all the time. I have a 4 year old son that I can barely run around with. Its very depressing. Ive been told by several opinions that I need another surgery – they now want to fuse L5-S1 but Im so scared of having another surgery. Tomorrow Im going for my first lumbar epidural steroid injection and Im even nervous about getting that done. But Im so desperate for pain relief. You cant even touch my lower back without bringing me to tears and the pain goes right down my right leg with most of my foot lacking sensation. If anyone has had any lumbar injections for pain relief please let me no what your outcome was. Thanks for letting me vent/share.

    • Amanda says:

      So sorry to hear that. When you need pain relief, you need pain relief. Hos did the steroid injection go? I hope it helped. Is the pain from the rod itself or from another part of your back? How would the L5-S1 fusion help? Is that where the pain is? Call my Egoscue therapist and see if he can help! I am praying for you. You will get through this!

  25. Milly says:

    I had harrington rod surgery in 1979 at Georgetown University by Dr. Langloh. I was 12 at the time. Wore a cast for 6 months after. I was 78% and 80% S curve. At the age of 16 I became and EMT and at 18 a Firefighter. My back kept me out of the Marines unfortunately. I carried 4 children and delivered all four naturally. Epidurals were not possible due to the scar tissue. I am now almost 46 so 34 yrs post that surgery. After 28 yrs of doing EMS and Firefighting I started developing major pains with limitations on standing, lifting and sleeping. I consulted a specialist in Pittsburgh and found major issues below fusion and rod. In September 2010 I had back surgery with another rod added, more fusion, cages replacing discs and some screws. It seemed like a success until Jan of 2012 when I started getting numbness going down left leg. Went back to surgeon and he found more damage below where he ended fusion in 2010. You guessed it, more surgery. In June of 2012 all implements he inserted in 2010 came out, he fused spine down to S2, now fused from T2 to S2, I have 3 rods, 6 cages replacing where discs used to be, 3 dozen screws, and a bolt into each hip. The pain in left sacroiliac joint had been intense since the surgery. No meds seemed to help anything until my primary doctor prescribed Cymbalta as a last resort. He said for some reason that helps with fibromialgia and MS pain..Within 2 days I was a new person. I am back to walking, playing Wii, shopping and able to do things with my family again. I don’t know what the future holds but I am enjoying each day I am given. Wishing you all success. I will never be able to go back to EMS or Firefighting but I thank God I was able to do it for as long as I did.

  26. Maria says:

    I just posted comment in the wrong area……… let me post again LOL. I am 43 and in constant back pain!! I had my Harrington Rod placed in 1983 just 1 long rod with all the stuff included with it. I have many many questions but where do I begin…..does anyone else have other medical / health issues that may be related to this?? Does anyone qualify for permanent disability?? And can you make ends meet with perm disability? I’m afraid to have the surgery to remove everything they said its too risky so I guess I will live with pain forever!! Always tired always exhausted never sleep right and its hard to work full time but I have to!! Please any information or advice any help please!!! THANK YOU

    • sharon says:

      I have had 5 back surgeries (looking at a 6th) with the original Harrington rods put in 1977. I am now on permanent disability. Please email me if you like, I would love to have someone to chat with.

  27. Brandy says:

    I have had the joy of having my Harrington Rods removed, but still have back pain on a daily pain. My scoliosis was discovered at age 8, and was monitored for about 5 years until they decided it was bad enough to brace. For a few years I wore that brace for hours & hours a day. The result at age 15 1/2 was surgery anterior/posterior spinal fusion. I Lost a little mobility but was able to still be a teenager. I got pregnant with my son when I was in college at 21 I gave birth to my 1st born, but what none of realized that durning labor/ strain of pregnancy a screw in my lower lumber spine came loose. After a few years of aganoy they decided that the only treatment was to remove them. At first it was releif but 10 years later. My spine has curved more, spinal stenosis has begun and gotten worse. We have invested in a hot tub, I try to do hot yoga, walking a stretching. But a few times a month there is tingly pain & extreme pressure ( a feeling like if I could crack or pop my lower back it would feel better.) It flat out sucks! Now my husband and I were just informed that our 13 yr old boy has scoliosis! Felt like I got punched in the gut. Now we have to wait and see what happens, and take a closer look at jr 8 year old daughter. Ughhhh! Stupid scoliosis!

    • Amanda says:

      Hi Brandy,

      I know it’s hard, but there are answers out there. Egoscue Therapy helps me a lot. I didn’t do it for the last two months, and I can feel my torso lilt more to the left. As soon as I do a half hour of Egoscue, I feel more upright again. Doing the therapy every day is my goal because it really does help. My nine year old son did tailored exercises every day for six weeks and his before and after picts are way different. Best of luck to you and your family!

    • Amanda says:

      Brandy, look into Egoscue Therapy for you and your son! Anne and Maria, you guys too! Keep looking and you will find help.

  28. Anne says:

    I am so sorry to see that so many other Harrington Rod patients are suffering, but I am not surprised. It is now well-documented that having such a long spinal fusion causes severe disc degeneration below the fusion. I am now 48 and had my surgery 25 plus years ago. Fused T2 to L3. I had the rods removed ten years later. I was very happy to get the horrible metal out of my back, but now, like others, I have come down with severe degenerative disc disease below my fusion.

    I have been in the ER twice in the past week for pain control. I spend all my time in bed, am totally disabled, and have tried every opiate pain med known to man. But nothing gets rid of that horrible, achy, bone grinding against bone feeling in my lower spine. I also have nerve pain shooting down both legs. I have applied for disability and am 14 months into the two year waiting process. I am still waiting to appear in front of the judge. I have a pain specialist and had a caudal epidural but it only helped the nerve pain for about two weeks.

    In this country, they will tell you that the only option for a scoliosis surgery patient with degeneration is to fuse the rest of your spine. But, I am unwilling to be re-instrumentated and lose the tiny bit of mobility I have left. Instead, I am looking into “flexible fusion” surgery/motion sparing surgery…I am also looking into getting an artificial disc. In other countries, there are other options for us. And there are spinal researchers in this country that I plan to get in touch with. I am doing lots of research on this. Harrington Rod patients need to DEMAND options other than more fusion and metal.

    Also, after much research, I have discovered that YES your curve can progress after surgery, with or without rods in. The surgeons don’t like to say this because they want to keep pushing scoliosis surgery on people so they can make their big fees. And until we demand better they will keep pushing us to get fused to the sacrum as an answer.

  29. suzanne says:

    I too had harrington rod surgery 35yrs + ago all went well until 10 years ago pain continually worse tried acupuncture, physio, osteopath. went to a spinal specialist told me the rods were all still in place and sent me away. the pain nowdays is pretty much constant and debilitating. i find valium is the only thing that helps with the constant spasms, but drs reluctant to give. i feel no one understands. physios just seem to want poke and prod but no long term benefit. The rheumatologis helped with spinal mobilisation but have not been able to find anyone who can/will do the same. As i move around a lot due to my husbands job, now living in Singapore it is hard to know where to look. i did come across and interesting article link included which might be worth considering but again who is the best so called specialist to see as so many seem out of touch with the proceedure we all endured.

    • Amanda says:

      Hi Suzanne,

      In Singapore I would think that you are in a good place to test out some traditional doctors. They might be able to get a sense of what is going on – perhaps by pulse or by being able to read the energy disruption in your body. I have found that continuing to try new things always pays off. I found Egoscue Therapy by mentioning my stiffness to a friend once. So just keep talking about it, trying new things, posting online as you have here…I’m sure you will be able to get to a place of feeling better!

  30. Jackie Parsons says:

    Wow, my heart goes out to all of you. One thing that is abundantly clear in all of these posts is that western medicine doesn’t know how to cure the underlying cause for the pain caused by these implants. So happy to hear that more young ones are begin treated with less invasive techniques.

    I was diagnosed at age 8 with S curvature scoliosis. I maintained a very active childhood however at age 11, my scoliosis was deemed serve enough and I was braced for 2 years, 23/7. After the brace failed to correct my curvature(65 degrees), I went in for spinal fusion surgery at Stanford Children’s hospital in 2001 at age 13 under the care of Dr. Gamble. The surgery was extremely successful (I was walking the day of surgery and discharged 5 days later). I am fused from T4 to L2 with double Harrington rods and a handful of hooks.

    The pain was at half my threshold for next 5 years; I tried combating it by being active as possible, yoga, swimming and with over the counter pain pills (most prescribed pain pills counteracted with my ADD/depression/bi-polar meds) When I was 18, my father introduced me to medical marijuana and it made a huge difference. It let me sleep, restored my appetite, improved my mood and the topical (spray-on grain alcohol tincture) reduced the stabbing nerve pain I would experience during spasms by 70%. I managed for a few years, but eventually the pain gradually increased. By age 23, I had tried just about everything. Corsets, tons of yoga, tiger balm, hot water, hot compresses, hot tubs, mediation, massage, and medical marijuana were the only things that could even touch the amount of pain I was in, save for acupuncture. Total game changer.

    I first tried acupuncture at age 24. At the time, I (as a physics student) did not believe in chi, energy meridians, reiki, chakras or any other form of alternative medicine. I did 6 sessions of pure acupuncture (1 a week for 6 weeks) and experienced almost complete relief from the bone pain. I then incorporated cupping into my sessions at the advice of my acupuncturist and within 4 weeks, 80% of my sensation on my back had returned and the nerve pain was gone. I find that 6 – 8 sessions at 1 per week give me about 6 months to 1 years worth of pain relief, but it does eventually return in full force if I discontinue. I really can’t stress how much relief it gave me. I hope my experiences will encourage you to try some of the methods I have found. Steroid/spinal injections, addictive pain pills, expensive neuro electro shock devices, novice physical therapy is all western doctors had to offer me and they are not sustainable solutions.

    Now at age 26, weather changes, cold weather in general, altitude changes, menses and colds/flus intensify all of my pain symptoms but as long as I keep up with the acupuncture and yoga I am at a 2- 3 pain level daily. No lifting, running, snowboarding, surfing, ski diving, rollercoasters or go-cart racing but I can ski, swim, walk, dance, hike, climb and do yoga like nobodies business, save the backward bends obviously. Sleep, concentrating, sex, sitting or standing for long period of time are still a struggle for me. My doctors told me the surgery should not affect my ability to have children but that has yet to be seen. Guess it’s a 50/50 deal.

    Here is something I haven’t seen brought up. About 6 years post op, the numbness went away and I started having a very strange symptom. Can anyone else physically feel the implant inside of them? Not through the skin but a conscious aware and sensation that there is a foreign object in your spine? I know this sounds crazy, but I would get this nearly uncontrollable to itch, scratch and rip the implants out. Any one else?

    • Amanda says:

      Hi Jackie,

      Thank you so much for your amazing post. I am sure it is helpful to so many people coming to read this page. Sounds like you have taken the bull by the horns and then some! And been the victor. I too have learned that it is about consistent self-care. Some – perhaps a husband – may think that we are over-indulging by, in my example, doing Egoscue therapy daily on the living room floor, spending 20 minutes each day in meditation, driving a long way to do a specific kind of yoga that feels really good, etc. But you and I know that it takes what it takes, and to be okay with this. Actually, grateful, for knowing that we are taking care of ourselves. Our bodies let us know what’s needed.

      It sounds like you have an amazing acupuncturist!! Fantastic.

      Your uncontrollable itching/scratching need sounds like something is indeed going on with the rod. Are there any other symptoms, maybe topically? Anything that might suggest infection? Although that might not be likely as it is a recent thing. Have you tried saunas? Near or far infrared in particular. When I first started them I was nervous that the rod would overheat since the infrared heats from the inside out, unlike a hot air traditional sauna, but that has proved to be not a problem. I always feel better after a sauna. And if there is an infection inside, the sauna’s heat would kill/disable much of the microbial load if you use it on a consistent basis. Check out the work of Dr. Larry Wilson and near infrared saunas for detoxification.

      Keep us posted please! Thanks again Jackie.

    • Kathy Sing says:

      Wow, I had my surgery at Stanford too, but in 1976. I have not had any pain other than some lower back pain. I had two children naturally. So I wish you the best when you decide to have children. I do everything other than the back bend or summersault lol! I only feel a weird sensation when I think about the rod being in my back. I had bone chips taken from my hip. That was the most painful. My surgeon was Dr. Bleck. He was one of the first doing these surgeries. I wore a brace for 2.5 years before having the surgery. Good to know you found relief with acupuncture; good to know.

  31. Marie says:

    I am 30 years old I had herington rods with hooks placed in my mid back on each side in 1999 I started having pain after I had my daughter I have been battling depression and anxiety since the surgery my mom said I had changed after my surgery and I have battled a very low white blood count acne and severe pain and burning where the rods are No doctors will help me with my pain which is ok I don’t want to be on meds I just want the rods out I recently talked to my doctor who done the surgery and he said it is not necessary for me to have my rods and it is a simple procedure which I believe is not I do not want to risk my life because i am all my daughter has and I don’t have anyone to help me. I have read that the metal can corrode and my surgeon disagreed he said there could possibly be a twenty percent chance of infection but not likely and they would have to drill off the marrow that is holding my rods he also said he would not do the surgery but another doctor would I am scheduled to see him and consult removing the rods but I am terrified

    • Amanda says:

      Hi Marie, I hear you! Don’t be terrified, that only compounds the pain. I know it’s hard, but doing your best, as I know you’re doing, will bring you through to the other side. Maybe you can make some adjustments in other areas of your life that will speed improvement? I wrote an article about taking 7 steps to feel better that perhaps can make a difference as you continue on the path to being pain-free. As for corrosion, I no longer ‘worry’ about that, because I do everything I can to help my body remove any toxic metals that may be hindering my health. Infrared saunas, sweating, kelp, sardines, positive outlook, rest, breathing…it all comes together to make me feel better. Please keep us posted on how you are doing, and I send good wishes your way!

    • sheila says:

      What kind of revision surgery are you looking into. I am supposed to be having a PSO surgery. Pedicle subtraction osteotomy

  32. robin says:

    I had a herrington rod implant back in 1989. also I had bone removed from my hip and added to the spine. unfortunately for me the lawyer who I had went through for disability forgot to show up for the hearing. I didn’t want to start all over again so I just put my big girl panties on and went to work anyway. yes I had pain. yes my balance is off. I worked cause I HAD to. well I fell dec.22 2013. The doc said the only thing that saved me from breaking my back was the rod. to make a long story short I was off work a little over 2 months. I went back to work and on the 3 day returning (12 hr. days) I hurt bad. I couldn’t take my meds at work . I left work and called the doc. and their reply was “look, u should be able to go back to work. we don’t give disability unless we do surgery.” so now I am stuck . what to do now?

  33. Vicki Pizzo says:

    Has anyone had Dr. Gordon Engler (NYU Hospital) as their surgeon. I consider this man as the person who saved my life. My pain was severe. Double curvature , top almost 80, bottom almost 60. Surgery was in the early 80’s. Never any problems other then pain. Top curvature is still almost 40%, as we all know surgery cannot fix a curve 100%. Take daily pain meds and am very careful how far I push myself.

    • Amanda says:

      Thanks for posting Vicki and I am glad you are doing okay!

    • Cheryl says:

      YES!! Dr.Engler was my saving grace too! I always said he saved my life!!! He did my operation in 1984 at NYU. I am still in touch with him!!!! I would love to talk to you Viki. It’s been 30 years since and 2 children later and absolutely no problems. He is just amazing.

  34. Vic says:

    I am now 53 yrs old. At 18 yrs old I was in a car wreck and ended up with a broken back.
    They put Harrington Rods in (1979) taking a graft from my left hip.

    No problems ever until I hit 36ish-37 – and out of nowhere …
    extreme low back pain going down into left leg.

    To best describe my leg felt like there was a muscle in there that was 2 inches long
    but it was being forced to stretch 2 to 3 feet – this caused a terrible burning sensation.
    To describe one of the several different types of pain I feel in my low back – sometimes I feel like my hip and low back area is so weak and just cannot hold my body up. I’ve been in pain management/physical therapy/chiropractic care thru the years.

    (back then)
    I was in pain for about 5 to 7 months before a back Xray showed that my Harrington rods had broken. There are screws up near my shoulders/neck area
    that are from the initial site of placement
    and the rods have slipped downward.

    Before they found this – the GP at the time eventually titled the problem “Fibromyalgia”.
    Which..back then (the late 90s’) was virtually unheard of.

    Finally after seeing the Xray and the rods – my GP doctor
    sent me to an orthopedic doctor.

    I don’t recall the terms but basically he said that scar tissue had
    grown around the rods and to remove them could possibly cause me to be paralyzed.

    Thru the years I’ve seen 4 different spine/orthopedic/neurologists …
    (even the surgeon that did the original surgery)
    (in hopes that someone would tell me they could fix everything)
    they have all declined surgery as an option.

    I have been on pain meds thru the years.
    Because I found an amazing, soft approach chiropractor who also offered physical therapy, massage therapy and a pain management medical doctor (all under 1 roof) – for the past 7 years the pain has been “tolerable”. (this means the pain never went over a 7 and if I was stable at a level 4 pain
    //on a 1 to 10 scale//
    I figured I was good with those type of pain level numbers…
    AND I could live with occasional 7’s but most of the time 4….

    My pain meds have not been increased in probably a good 4 to 5 years.
    In fact, I was able to lower my dose on the break thru medication twice
    in the past 7 years…

    However now…
    the past four to six months – my pain is once again, almost intolerable …

    But my chiropractor also doesn’t practice anymore and I am only seeing the pain management doctor. I am unable to find a chiropractor that I feel I trust AND
    that uses the silver gun type of instrument
    (I think its called an activator? not sure though)
    to readjust me. I’m definitely not okay with the old fashioned hands on approach
    of adjustments because of the rods.

    The issues I have had with my health
    back and should pain is located
    mostly my left side – I have shoulder pain
    (it feels like there is something on the side of my body – the area on my body that is under where my arm would rest against – there is a muscle or bone in there that just aches like a bad tooth. Sometimes the ache turns into a burning sensation.

    I have that same burning sensation in the area that is right in between my neck and top of my back and snack dab in between my shoulders/arms.

    Gosh sometimes you can touch it lightly and it hurts like a big dog.
    (I don’t know what that means but I used to hear my uncle say it) “hurts like a big dog” ?

    I have gerd for the past 15-16 years.
    Sometimes so bad it feels like I am having a heart attack…
    (but I am on meds for GERD .. I guess every now and then it just doesn’t work)
    I was diagnosed with the fibromyalgia (now wondering if this is due to the corrosion)
    I am so tired and fatigued sometimes I just cannot make it thru the day without a nap.

    Lately (inside the past 4 to 6 months)
    I wake up in the middle of the night
    with so much pain, I vomit.
    for the first time ever in my life, I was suffering panic/anxiety attacks.
    They seem to have stopped the past 1 to 2 .months.

    Sometimes I get shooting pains in my head … it feels like a muscle is tightening up, having a spasm but then it disappears and won’t happen for weeks.

    I have leg cramps at night – now that’s my favorite ;)
    Oh geezel pete .. thank God they pass within 20 to 30 minutes because
    they are killer. And even if I have taken muscle relaxers they can still happen.

    I wanted to share my symptoms as there seems to be a common denominator here for
    people with Harrington rods. And now I wonder if some of my problems aren’t because of corrosion!?

    I hope if enough people share their symptoms and experiences the medical
    field will better understand whats going on here. I can’t believe they used these
    Harrington rods in the first place … corrosion…breaking …
    I always felt so safe with medication, physicians, medical treatment….
    the medical field as a whole…
    but no more unfortunately.

    I know people make mistakes …
    I get that…
    I feel like I have had to personally suffer thru quite a bit of
    “mistakes” and they are affecting my entire life…everyday :(

    • Amanda says:

      Hi Vic,

      Gosh you sure are going through a lot! I do feel for you, but I know you can feel better. What I’ve found over all these years is to keep on keeping on. You will find help. Keep looking for a chiro or other physician who knows how to help you. I keep seeing people until I meet a good person to know. I visualize it happening too, and that hastens it along! Don’t worry about the metal corrosion, I’ve learned to not worry about things I can’t control like that. So you have fibromyalgia? Have you looked into iodine and the work of Dr. Brownstein? Do you know about the earthclinic site? Check them out. I think very gentle yoga could help too. Let me know if you want to skype with me about that, as I teach it and could start you off with some gentle poses that when done every day, can really help. Plus Egoscue therapy is wonderful!

      You can feel much better! Let me know if I can help.

  35. Katherine says:

    I had a spinal fusion in 1975 at the age of 15. About 12 inches of my thoracic spine is fused and grafted with bone from my hip. I had it done by Dr. Edgar Dawson at UCLA. I was in a body cast for almost a year.
    I have not had any problems that I can relate to the fusion. I don’t suffer pain. I am actually very strong and able to move really heavy objects without feeling like I am putting undue strain on my back. The only thing that bothers my is the rigidity and inflexibility because I do ballet and tango. Being unable to round my spine and arch my back is a little frustrating but I am lucky that I don’t have any worse health issues so just do what I can.
    I have four children and they were all born vaginally. I had epidurals and each one was different in the pain department but I didn’t suffer a lot of pain and the births were fine. (Fortunately none of my children have scoliosis.) The only health issues I have had recur is a tendency towards bronchitis and coughing. I have often wondered whether it would be better to get the rods and screws removed but my doctor has passed away and I haven’t had the need to see an orthopedic doctor for my back. I don’t think I have ever had to see a doctor for my back. I ski, scuba dive, hike and feel as though I can do anything anyone else can do. I am curious though about the possibility of the metal corroding and leaching into my body and will ask my GP about it when I see him again.
    I am sorry to hear that so many of you are suffering from this type of surgery and hope that you are able to find someone to help you. Now I’ve probably jinxed myself so don’t be surprised if I write again and have something to complain about!
    Good luck to all of you.

    • Amanda says:

      HI Katherine,

      You will not jinx yourself, no way! I am glad to hear you are doing great. Skiing, scuba diving, hiking sound awesome! My fusion was done in 1983 and it feels okay too. I am a yoga teacher, and before class I often tell new students that I will be telling them to arch their spine, but won’t be doing as I say. Just goes to show we all have different bodies, and we do what we can.

      Re: the metals corroding, I don’t think about it now. My blood tests for metals did not show anything suspicious, and I simply live as healthy as I can, with plenty of rest, movement, nutritious diet, and not stressing out about things I can’t control, since I can’t get the rod out.

      Keep balleting and tangoing!

  36. Cheryl says:

    I had my Harrington Rod put in by Dr. Harrington himself, in 1966 (I was 15) It was in Houston. At the time, the orthopedic surgeon in Bakersfield, California (where I lived then) who was trained by Dr. Harrington, did not feel qualified to operate on my curve. I remember it was an “S” curve, requiring only one long rod. I was in a body cast for a year (I think), and had to lay totally flat for 6 months .. no walking, sitting. I have had no issues with my rod until about 4 months ago. I now have lower back pain, thigh pain and knee pain. I started researching Harrington Rods and learned about FlatBack Syndrome .. and It sure seems to fit my symptoms. I will be making an appointment with a doctor to have it checked .. I haven’t had an ex-ray of my back in EONS. It has been very interesting reading everyone’s story. Good Luck to everyone.

    • Amanda says:

      I didn’t even realize there was a Dr. Harrington! Thanks for sharing that. Good luck to you too Cheryl. I hope you are successful seeing your doctor about your back. Maybe he/she will shed some light on the situation. Please let us know how it goes!

  37. Nancy says:

    I had an extensive spinal fusion and single Harrington rod placement in 1969. I was 16 at the time. The entire experience was frightening and painful beyond belief. I have had 2 children, both normal vaginal deliveries. My rod broke sometime while I was in college, I have no idea how. I had back spasms for a period of time when that occurred, but they eventually subsided. I dealt with all the pain, uncertainty, fear during the procedure, recovery, and since with what I guess could be described as steely determination. I got very little support or understanding from anyone in my family at the time of my surgery…. so that sort of set the tone for my self reliant approach. I may have had some consequences from this surgery but frankly, I just learned to tune out to my body. Maybe it could be described as transcending. I have had pain forever, it is worse at the end of the day. I cannot just stand around, either sitting or walking and I am ok. I find lying flat for about 20 minutes at the end of the day helps. On the weekends when I am not working I nap in the middle of the day, which helps. I have kept my weight low to assure that doesn’t add to the burden my back has to manage… I read the book on the Esocue method several years ago and use those exercises successfully. I do yoga stretches, which I self modified to accommodate my inability to touch the floor, that helps. I try to soak in a hot tub whenever I can and warm baths help. I have a great heating pad, moist heat, which I keep near my bed and use when I need it. I meditate. I am mostly vegetarian and am careful about my diet. I am now 61 and other than taking things slower and making things physically easy, am still working.

    I would say my greatest challenge in life have been the emotional aspects of this illness. I was lucky to always be employed, with health insurance and so have had some very helpful episodic therapy to deal with the body image issues, the sense of betrayal I felt, and some abandonment issues resulting from my family’s inability to effectively support me during the years following my surgery.

    Still, oddly, facing this challenge has probably, on the whole, been a good thing in my life. It has made me compassionate and aware in a way I probably would never could have become without it.

    • Amanda says:

      Hi Nancy,

      What an interesting post. I relate in that it was a horrible experience that I sort of blanked out – and turned to alchohol and drugs as a teen to keep it blanked out. It’s just a very tragic, painful experience for anyone to go through. Life-changing, body-altering. Today my husband took pictures of me on the beach doing a few yoga poses, and when I saw the one of my trying to do reverse prayer back bend, I exclaimed ‘Gosh, that’s my backbend?’ I was just standing straight up. Of course I know I can’t bend my back but in your head sometimes you think it looks different. You could say that we are all still coming to terms with our bodies.

      I think for me, that the spinal fusion made me angry at conventional doctors – a feeling I hold to this day (though with compassion – when you don’t know, you don’t know). My surgeon did the best he could. I don’t blame him. I am grateful that I didn’t become all bent over and deformed. But having a mobile spine is very very important. And I, like I’m sure all of us here, miss that flexibility and movement very much. But as you said, facing this challenge has brought positive results. Compassion, a desire to help, gained knowledge on holistic health, have all resulted and these are great things.

      Thank you for your words, and your upbeat attitude. We all appreciate it so much.

      • Nancy says:

        I saw an orthopedic MD several years back, had an X-ray. He said that newer understandings about how the curves develop over time have lead to the current practice of using 2 rods. The single rod and fusion helps correct the lateral curving. However, there apparently is also a twisting effect that occurs over time, and that in my case is occurring. it is what impacts the unfused, lumbar discs. Those discs also absorb all movement for everything above that is fused, so are vulnerable because they are overused. He did not have any real good options to suggest. I would never consider another rod, fusion, or having the rods removed… for me.

        At the time I had my surgery everything was different. Care Providers didn’t educate you, no one told me how it would feel, what to expect. Everyone seemed quite indifferent and the nurses were on the whole, not very engaging. I had a team of doctors (residents, interns) come into my room a few days after my surgery. He said we are going to flip you over to look at your incision. I said, no you are not (pain level at that time about 12 on a 10 point scale). He said you’ll be fine and proceeded to flip me over with the help of several of the others. One of my parents was right there and did not stop them. I don’t think anyone in the entire hospital missed the scream that I put out when they did that. THEN they medicated me.

        I went through the rough adolescence, rebelliousness that lasted for years and almost militant independence… a failure to trust others has been a theme in my life. This was rooted in the trauma of the experience, and fueled by anger but I didn’t recognize it at the time. I’ll bet this is a common adaptation, but I decided to become a healthcare provider to try to fix the sad lack of engagement and compassion I saw even in the very good hospitals of the day.

        What has helped me the most is working on not hiding my back. I let it show, and when I see a photo or someone comments I let the feelings just be there. I try to not allow my ego to rule me. Being imperfect is perfect. Others are imperfect in ways that can’t be seen (as I learned). I’m glad mine can be.

        I’ve studied and thought about pain. Much of what is problematic about pain is one’s emotional reaction to the pain. If one thinks OMG, or I am helpless, or this will never improve, then their pain and fear will fuse. They will hurt more. So I have worked to separate, in my mind and experieince, fear and pain. Meditation helps. Therapy helps. If you can find a real friend, that helps too.

        Thanks for your comments. Nancy

        • Amanda says:

          Yes, Nancy, we are all imperfect and in that we are perfect. Have you read The Power of Now by Eckart Tolle? I find it very helpful for all of life’s hard situations. We have three options in a tough spot: remove ourselves from the situation, speak out about it, or accept it. I accept my rod and my fusion. To not accept it would be fighting what is, and that would be insanity (plus it wouldn’t feel too great). We use our life lessons so that we can help others through their trying times. It is wonderful to hear that that is what you are doing.

          Re: the twisting effect over time. I think that is happening to me too. When I kneel and site on my hips, one knee juts our further than the other by a half inch or so. This is new. Also when I look down at my belly, there is more of it on the right. So some twisting is happening. Hopefully I will get back on my daily Egoscue and this will help.

          Much straight and even energy coming your way from me,

  38. sharla buzzard says:

    I have a Herrington Rod which was done in 1986 at Shriners Hospital .I am now 44 and am experiencing daily pain and random bone pain in my elbows and knees at this piont I am not so nice when you are hurting all the time I feel as if im pulling teeth for some pain management .Im so glad I found this site I was beginning to feel crazy.

    • Amanda says:

      Don’t be frightened by reading through some of these comments. I have a rod since 1984 and I have no pain. I do egsocue therapy exercises every day and it helps a lot with alignment. Good luck and you are not crazy!

  39. Jodi says:

    I am experiencing the same thing. I’m getting ready to have an injection on Tuesday , scared to death of what the future holds for me. I just spent the last three weeks on my dads couch. The first two weeks i was unable to use the restroom due to pain. Also lost feeling to go #2. the surgeon said i needed surgery or i would progressively get worst. Then for some reason changed his mind about doing the surgery? So has he chosen to leave me in crippling pain for the rest of my days?

    • jill says:

      Jodi, does your surgeon do salvage surgeries? It was very hard for me to find a surgeon who was familiar with my condition. I had rods in 1988 and was recently diagnosed with flat back syndrome. My original spinal surgeon was not familiar with the condition and there were only a few in the whole state of michigan. Luckily I found a great surgeon 30 minutes away. If your surgeon will not do the surgery, try to find an orthopedic spinal surgeon who does salvage surgeries (surgery to correct a previous surgery). I am 4 months post op this week and it was the best decision of my life. I was also told that without surgery I would continue to get worse. And the longer I waited to have the surgery, the harder recovery would be. It’s been 4 months and a hard road. But worth it for me to get my life back. Good luck in whatever you choose to do.

  40. Tim says:

    Have anyone tried the pilates method?

    • Amanda says:

      My mother likes pilates very much. Corework is helpful so that you can use more of your abdominal muscles to support the rest of your body. Especially combined with Egoscue therapy.

  41. Donna Kearney says:


    I had a harrington fusion when I was 15, back in 1970. My sister also had one in 1971.

    We were determined to be hereditary because we both had scoliosis/lordosis, but no one else in our family, to our knowledge, had these issues.

    I, now, at 58, am experiencing some stiffening and went through a rather bad spell in the fall after doing a job that required me sitting at a desk for several hours a day for a couple of week. i had x-ray done at the time and the report came back with severe arthritis at L5/L6 (I think that was it).

    My sister used to tell me she has never had a ‘pain-free’ day. I don’t think she suffers now as much as she did, and some of her trouble may have been more related to another issue she had resolved a couple of years ago.

    I attribute most of my discomfort from normal aging. However, that being said, my left hip can be quite sore, and I have sciatica which can become quite intense.

    I have always been active; work out still 3 – 4 times/week, alpine skied until about 5 years ago and stopped only because opportunity stopped presenting itself.

    I have not considered having the rods removed, I would think they’re likely so entrenched in with muscles etc. that it wouldn’t likely be an option.

    I am interested in participating in any studies. I once asked a physician (in my early 30s) i worked for who specialized in back issues what I could look forward to as I aged, in terms of osteoporosis. His response to me was “drink milk!” He said that not a lot was known about that as there were few people who would have aged at that point.

    I had two children, both without the benefit of epidural which was not an option for me; births were no problem for me and natural. I golf regularly and walk 18 holes. I do yoga — not particularly well, but I find it helpful with sciatica and flexibility.

    If you have any questionnaires etc. you’d like me to fill in, I would be happy to contribute.

    • Amanda says:

      Thank you Donna, I will be sure to contact you if we ever do something like that. I find I need to do daily exercises to stay as aligned as possible, and less stiff. Maintenance is key, and sounds like you do that as well. We will keep in touch.

  42. Kelly Marie says:

    I am 31 years old and had my Harrington rods put in when I was 12 years old (April 1995). My rods are in the thoracic region only. I believe T1-T9. Since my surgery I have lived a normal life. In December of 2004, I slipped on ice and ended up with a bulging disc at L5-S1. Since then I have had pain on/off in my low back and sciatica. I was told that with my rods in place that it causes other areas of the spine to take any blunt force. Since my injury in 2004, the low back pain has gotten better. Exercise helps mostly. All doctors wanted to do was prescribe pain killers and send me to the pain clinic for injections. I do not like take meds daily or getting injections. Up until recently i have barely had any thoracic pain. The past 6 months I have noticed times of burning sensations along my back where the rods and other hardware is located. Has anyone else had this type of pain? It continues to get worse. I finally got into see the surgeon who did my back surgery in1995 and after sending me to physical therapy for a month, a bone scan to make sure I didn’t have any stress fractures, I am now scheduled to have rod and hardware removal surgery in 10 days! Has anyone else had this type of surgery?

  43. J says:

    interesting. i have “luque” rods which are wired on & meant to be permanent. chronic pain. disc degeneration & nerve damage above & below rods. it never occurred to me that the “stainless steel” rods or wires would rust & cause systemic issues. hmmmm. trip to doc to test for elevated metals or go staight for a detox smoothy??? Thank you for research & initiative. i will try to follow

  44. J says:

    oh & chiropractic keeps me walking, literally.

  45. Marg says:


    I would like to ask JILL who her salvage surgeon is and what hospital and state he practices? I have considered this for many years. My rod was placed in 1975 by an orthopedic surgeon who trained with Dr. Harrington in TX. I know the top hooks are loose, as they are noted to be in different positions on x-rays. But the biggest problem I have is the no compensatory curve, the natural Lordosis. Flat-back syndrome with pelvic tilt. Does not ever help with clothing, nor standing and I have noticed some slight kyphosis lately. With surgical , early menopause due to endometriosis, I worry about the general health of my spine. Luckily, not too much pain except with lifting too much weight or the half dozen hard falls taken on ice, concrete and wood floors since 1975. Sitting or standing too long does bother me as well because of the tilted posture I have with the flat back, so I bend my knees, or lean forward. Carrying a baby was not too much trouble except back sleep deaden my lower legs, so pillows helped. Barely avoided anesthesia with 24+ rupture of membranes but was happy to be awake as he was our only biological child. Amanda, I will try the exercises for posture you recommend. But JILL, love to know who you found and where. Thank you for this forum to discuss this issues with these rods. My parents signed for me when I was 17 1/2 to have the surgery. I am a nurse and worked in orthopedics after school. I wish I had had more information to make my own decision back then.

  46. Patsy says:

    Well, from scanning comments of those who have previously posted…I might be your Oldest! At 15 yrs old I had a Harrington Rod placed in 1962. It runs from my shoulder blades all the way to the end of my tailbone. I was the 15th patient to receive a harrington rod they said. I had a great deal of back pain, sciatica, etc during my late thirties through fourties. Then things settled down. Now for the last 10 years the scoliosis is on the move in my upper back and KILLING me! I lay down on the floor and place a towel just above my shoulder blades. It takes me 10 minutes to be able to lay flat..but when I accomplish feels so much better. I feel like the muscles are being pulled beyond their limit and it hurts to stand up straight most of the time. I have zero space left between vertabraes. I am trying to find a brace to wear at night to pull shoulders back, help posture. and align my upper spine..any thoughts? I am 67 years young!

    • Amanda says:

      Wow how cool to hear that you had your surgery back in 1962. I am sorry to hear you are having a hard time! I think there are many things that will help you. First, find an Egoscue therapist. I talk about this a lot in the Comments section. Two, look into Scar Release Therapy as done by someone like Marjorie Brook ( I have just finished a post that I wrote about my experience with this therapy, and I feel it is very valuable. Third, as I learn more about Original Strength training, I will write about it. I have already been doing the rolling and crawling and I feel like it’s helping me straighten out. Do you mean the curve is getting worse in your upper back where there is no rod? Please subscribe to this blog so you can be updated on the therapies I talk about. More soon.

  47. Lynette Whiting says:

    I live in Australia and this has been great reading for me. I have had a spinal fusion since I was 14 back in 1976. I didn’t get a rod but had screws and cables. I have had pain all my life but it sounds like it was no where near as bad as some of you. It is only just recently (in the last 6 weeks) that the pain has changed and become more intense. The x-ray has showed that the cable between T10-T11 has fractured. I’m now up in the air as to what my next course of action is. Do I have a full revision, have just the cable removed or just leave it? I also have a severe restrictive lung defect so I was very interested to read Judi’s post and am now wondering if my lung issues are related to chromium and nickel. I have always kept myself fit and healthy but I can now no longer exercise due to my lung problems. Thanks all for your posts I will take notes when I see my Surgeon in 3 weeks.

    • Amanda says:

      Hi Lynette, So good to hear from you in Australia. I am sorry to hear about the issues you’re having. I don’t know if you can travel to the US, but I have heard from a fellow spinal fusion patient that there is a wonderful doctor in New York who did her removal surgery. Dr. Cunningham at the Hospital for Special Surgery. Soon I will do an interview with her about the experience.

      Would a fractured cable cause the pain? Let us know what the surgeon says in three weeks. Also, maybe you could see someone who knows about spinal fusion scars and adhesions? I wrote about that recently.

      As for chromium and nickel, there are ways to detox the metals. Let me know if you’re interested, but here’s some info.

      Good luck, we are praying for your health and happiness!

  48. Eric says:

    This is a great forum and it’s very helpful. I had Harrington Rod fusion in 1984 at Mass General Hospital in Boston at the age of 13. I have the same sciatica symptoms that I’ve read about here and would be interested to learn more about a solution. Additionally, I also get minor aches and pains when it rains or at altitude which now makes sense!

    The first 15 years post surgery were pain free and I was very active and physical. Then I started experiencing lower back pain/sciatica (self diagnosed) on my left side, which is very similar to what others describe here. It only acted up when I was standing or walking on a flat surface for an extended period of time. It did not bother me if I was playing a sport, hiking, or generally moving up and down. I could immediately get relief from sitting down for a few minutes. I was concerned that it was bone related or perhaps something with the rods. About ten years ago I visited a well known orthopedic surgeon in San Francisco, had X-rays and an MRI, and he couldn’t find any specific reason for the sciatica. He saw some arthritis below the fusion line in my spine which he attributed to compensating for the fusion. He suggested removing the rods might help but there was a lot of scar tissue/bone around the rod and no guarantee it would help. I went on my way and have been dealing with it ever since. I tried acupuncture but it didn’t help. It has been very manageable until the last month, when something interesting happened.

    The Sciatica pain completely shifted from my left side to my right side and is now worse than ever. Nothing happened, no accidents or falls, and I’ve been doing the same things I always do. The problem now is that I can’t get relief from the pain as easily and it can come at any time. I’ve been encouraged from reading about Egoscue Therapy and will definitely give that a try. I’m also interested in the benefits from Yoga and had always thought that was out of the question for someone with a fused spine.

    If anyone has found other exercises or methods to deal with sciatica pain or how it is related to this surgery, I would greatly appreciate hearing it.

    • Amanda says:

      Thanks for your post Eric. We were having this fusion done in the same year, at the same age practically. It is interesting that the sciatica issue would go from one side to the other but not surprising. My guess is either compensation causing that, or perhaps what Dr. John Sarno writes about in Healing Back Pain (an excellent book).

      Everyone can do yoga! Yoga strengthens, and with that comes flexibility. I teach classes, and I can’t bend my back, but I can sure do the straight back poses really well! I have a bit of an advantage, I tell people. But the yoga definitely helps with keeping as much of your body in motion as possible, and in a non-compacting way (need to be sure you’re doing the poses correctly. In fact we could skype and I could make sure you’re doing certain poses with the needed alignment).

      My thoughts on your situation: get with an experienced Egoscue therapist to see how that makes your body feel (I bet much better), and, start some gentle yoga, and, keep an eye out for my upcoming post on rolling and crawling a la Original Strength. I talk about it a little bit here. Good luck!

    • Karen says:

      Hi, I am so glad to hear someone else say they can feel there rod inside. I had my spinal fusion in 1974 at Children’s Hospital in Boston. I was in a body cast for 1 yr and then a brace for 3 years. I am now 56 and having pain in my sciatic nerve all the way down to my foot, but I also feelthe rod and sometimes I hear a popping sound with a hot feeling especially in the top of my back where it ends. I will say I have seen a chiropractor who specializes with fusions and have had some relief. I now have Heath ins. So I am going to back to an orothpedic,because I can no longer stand for more than 1 hr.This site has been helpful to hear what other people are going through because I don’t know anyone who has had a fusion.

  49. Brooke says:

    I had Harrington’s with bone taken from my right hip put in when I was 16 (1993). I am now 37, I’ve maintained a healthy active lifestyle, brought 5 beautiful children into this world, and the only problem until recently was EXTREME right shoulder pain. I noticed this pain was more prevalent when I would be working at my computer. I attributed this pain to the fact that within two weeks after my rods were placed, one of the hooks came “loose” if you will and was literally floating around within the tissue of my right shoulder, so therefore I assumed this pain was from scar tissue formed during the time it was literally MIA. The surgeon did have to go back in and open up the upper half of my back, remove about 5 inches of the rods, and replace it with rods with secure hooks. I wasn’t happy about this. At any rate, ff to today and I’ve been pretty comfortable with the rods. However, I have noticed in the last 4-5 years (my youngest child just turned 4) I have noticed extreme lower back pain. This is where all of my movement comes from, so again I assumed this is why. I mean, you use one thing a lot and it’s bound to wear out or get tired. Right? Well, now I can’t sleep on my right side. I mean, I can, but when I go to roll over to my Left side, I almost can’t. It’s like my lower back and right hip/leg are “locked” or something. I literally have to push myself over onto my back. I’ve thought about having them removed, but that is the extent of it. I guess I’ve kinda went by the “if it ain’t broke don’t fix it” motto.

    When I had this done at the age of 16, my mother was the one who ultimately made the decision for me to have the surgery. With the internet not being around then, I do not feel she educated herself well enough to made an educated decision, as far as what the future would hold. I do know my back pain has progressively gotten worse over the recent years, and after reading some of the post on this forum I am beginning to really question if I shouldn’t look further into removal of the rods. I do not want to be on disability, and not be able to enjoy my children growing up. Should I be concerned? At the moment, my husband and I do not have health insurance b/c we are self employed. And would it even be covered by insurance?

    • Amanda says:

      I think some of it would be covered but of course depends on the plan. So sorry to hear about the pain and discomfort you have. To not be comfortable when moving during sleep is the worst! I have been there. We can talk on the phone if you’d like. I do know a woman who had a very successful removal surgery done in NYC. I am sending you good energy and know you will get to the bottom of it!

  50. Justine says:

    Hello I had has a big operation my spine for new a rods and 24 screws 9 years ago I was very painful many suffering, I can’t sleep for 3 months I wake up all night but not much sleep just one to two hours then back sleep few hours then wake up beacuse pain my spine, I took some tablet help less pain. I aw near faint beacuse too much pain for me. The doctor say if I didn’t go operation my spine I will never walk, I will get wheelchair beacuse found my spine nerve was near break from my neck and my spine bottom we are shocked we decide say yes turn go operation for 7 hours repair my spine. The doctor say small Harrington rods from my neck to my size bra but I wake up next day nurse help me change clearly spine thing my mum was shocked why I got a biggest operation my pine big Harrington rods and 24 screws my neck down my bottom. Last year Xmas we went back hospital check MRI scan and cat scan then little found problem they told me one rods is biggest then other one rod is small I was shocked. The doctor say I decide want other operation small cut off rod and take out one screws but doctor say risk cut small rod off but metal can spread infection my body I will get very ill I know hard for me then doctor say problem my spine left side near shoulder, muscle make spin why place screws there. I was born I hot problem my spine little when I was 8 years old thrn doctor found say little problem my spine then older get worse worse I can’t breathe and can’t walk well, I got painful my left leg beacuse I feel like nerve pull, I was very ill not much ate , problem breathe, I was fall, funny balance I feel like my brain water waves not right then operation my spine I was wake up I was shocked my breathe is open better lots I set lots , I remember colour and names doctor thought my memory was lost things

  51. sheila says:

    I have been told I need a pedicle subtraction osteotomy surgery. I had the harrington rod spinal fusion in 1979 for scoliosis. Body cast 9 months. I was ok for years. Now I have been diagnosed with flat back syndrome. I am in PAIN big time. I am a active person, not now. It hurts to stand up and to walk. I bend my knees constantly. I am having an MRI next week to see what more the doctor can see compared to the x-ray. Then I have lots of questions. I am scared. I am 56 yrs old and I live in S.C. Not sure if this doctor has the skill to perform this. I will know next week. There are few doctors here in my area who do this. I live in Beaufort, SC. My doctor is in Charleston about 2 hours away. Which would be great if he turns out to be the surgeon . Anything anyone can tell me, I would greatly appreciate. Thanks, Sheila

  52. John says:

    I must say that these comments are a great resource for anyone who has ever had Harrington rod spinal fusion. Never before have I read such varied and diverse experiences and outcomes from Harrington rod surgery in one place!

    I had Harrington spinal fusion in 1987 at the age of 10 with Dr. Jose Corvera at South Baltimore General Hospital (now Harbor Hospital Center) in Baltimore, MD. I have a classic “S” curve with the thoracic curve smaller than the lumbar curve. I am fused with one Harrington rod from T-4 to L-3. The curves were stabilized to approx. 40 degrees thoracic and 60 degrees lumbar during surgery. I had a normal recovery and was in a plaster cast for approximately six months. Generally, I had a normally active childhood, and with some limitations, I was able to function well and even played high school baseball. No football though!

    Sometime between the ages of 18 and 28 the rod became unhooked at the bottom and the curves subsequently progressed. Since then, my thoracic curve increased to 66 degrees and the lumbar curve to 88 degrees. I have little pain that I can detect from the upper curve, but my lumbar spine is quite painful most of the time. In fact, I have had many tough bouts with sciatica, increased weakness, numbness, and difficulty sitting or standing for any period of time. All of these symptoms have been progressive in my 30s. I am now 38 years old and most days feel like an 80 year old. My orthopedist told me several years back that I already had more arthritis in my back than the average 80 year old, which made me feel great!! Not!!

    Anyway, I am going to look into many of the therapies suggested here for some relief. I haven’t tried much except for Ultram which I take every day (100mg, twice daily) and the occasional methylprednisone dosepak when the sciatica kicks up.

    I find that I can’t exercise much–not that I was that much of an athlete to begin with. Thankfully, I have always been employed in a sedentary office where I only have to exercise my brain for a living!

    To Amanda: This is a great resource and I hope you keep it up!

    • Amanda says:

      John, thank you so much for your kind words. I know what you mean when you say you feel like an 80 year old. When I had back pain in my 20’s, that’s exactly how I felt. Standing up took a minute to get upright. There are many things you can try and I am sure that at least one or two of them will be very helpful. The three that come to mind are Egoscue Therapy, Original Strength, regular massage (wish that weren’t so expensive but maybe you can find a bartering partner or a masseuse who needs the practice to get licensed etc), and perhaps scheduling a skype session with Marjorie Brook. She is an LMT who is very knowledgeable about the body. I saw her for a scar release treatment and she was very helpful. Here that post. Please do keep us posted on what you learn!

  53. Wanda says:

    March 2015 my Harrington Rods will be 50 years old. I was 13 at Toronto Sick Children Hospital. Forward 50 years and alot of pain. I Had 5 minimally invasive surgeries last year at Bonati Spinal Institute Hudson, Fl north of Tampa. Doctor used arthroscopic procedures to work on my L3, L4 and L5. He was able to remove the Herniated bulge, shave off the compressed areas and shim up the areas with Cadaver Plugs. My right leg Sciatica, numbness and weakness improved greatly and I was so happy. Then almost one year to the day the shooting pains and numbness and weakness started up again and almost worse than before. Dr Bonati wanted to remove my rods at #4 surgery but could not due to the rod fully encased with soft tissue and the golf ball at the bottom of the rod took him 3 hours to shave off. That was like magic; but now back again as more tissue glazing over the end of my rod pushing down on the L3, L4 and L5 causing pain and cancelling all the minor surgeries. Dr said I was the hardest case in his 26 years of working on spines. (he removes fusions and corrects spines without appliances 97% success). He reluctantly suggested I get the 3 vertebrate fused to keep the decompression from continually happening due to age, gravity, rods and movement. I live in Fort Myers, Florida and not sure where to turn. Dr Bonati suggested an older orthopedic surgeon with neurosurgery specialty and one that is familiar with scoliosis and Harrington Rods. Where should I turn. Any Ideas? Wanda

  54. terri says:

    name is terri i had rods put in my back when i was 13 do to scolisis. I am 44 now and I have had a second surgery 8 years ago, to fix problems that the first set caused. I’m in pain all day, everyday I have surgery to put my damaged nervers to sleep in my legs for the back surgerys, it started out having them every 3 years now I have them every 4 months. my hips are bad due the scraping of bone for the surgeries , I’m having a mri done to see why they locking up. Six months ago I was told about a report that I didnt know about, that one of my rods from the second surgery is fractured. I’m going to a new spine doctor in a week to see what needs to be done. If anyone knows what I should be doing please let me know. I have started getting all my medcial records from the second surgery, trying to find out if the rods where recalled.

  55. Karen Adler says:

    Scoliosis surgery. Summer of 1976. Age 12. Harrington Rod. Presbetarian St. Lukes Chicago. Dr. DeWald. Nurse Mary.

    Now. 51 years old. Low-grade pain. Bellydance & yoga helps for self-confidence & stretching. I don’t feel much in my right side of the spine, so maybe some nerve damage. I had a body cast for 9 months. at a vulnerable age which I’m sure contributes to poor body image.

    I’m working to develop a strong core as I age. Engaging your core is essential even though you have a rod to keep you upright. I practice yoga and bellydancing, which I feel are helping greatly to engage my body and work through body image issues.

    I also tend to take an Advil in the middle of the night, which allows me to go back to sleep. According to my sister, when we went on vacation, I don’t move in my sleep, (maybe from the cast) so I take an Advil when I wake up in the night and I sleep very soundly until the morning.

    Lucky so far I haven’t had subsequent surgeries or dibilitating pain, but I wonder about the corrosion and eventual deterioration of the lower spine, which has been taking the stress for 40 years.

    Nice to know I’m not alone.

  56. Emma Causey says:

    I appreciate these post so much. I had Harrington rod surgery for acute scoliosis in 1976 in Gary Indiana at Methodist hospital. I am a mother of 2 adult children that I delivered vaginally. My fiest delivery was easy…a girl! My second delivery was quite scary. With the
    help of forceps, Jonathan’s big head emerged through. I was knocked out and woke up to my hubby holding Jonathan commenting on what a brute he was. I am presently experiencing myofascial pain and difficulty breathing, but I am determined to be less frightened of the past surgery and more relaxed towards the future by staying at a fit weight and a more happy place in life. I practice as a marriage and family counselor and work very hard to have a gentle and quiet spirit towards my own life. What has been was to help towards my future, what is is also directed at my tomorrow. Take one day at a time and be filled with gratitude. God bless!

    • Amanda says:

      Hi Emma,

      What a lovely post! Fear’s very action tenses us, even if we’re not aware of it. I think your idea to be gentle to yourself and others is a wonderful one. This is what I try to do as well. Practice makes progress over the years! Have you looked into scar release therapy? That will help with the unsticking of the fascia. Big scars like ours especially will pull on our fascia/connective tissue and cause pain frequently. I saw Margorie Brook in Long Island and boy do I wish I lived nearer her so I could see her regularly. She told me that for us, massage is a necessity, not a luxury. Give it a go and let us know what you find. Good luck and thanks again!

  57. Norma Rimmer says:

    Hi, Just looking at the web as you do and fell upon you. | also have a Harrington Rod in my back and feel the need to say how grateful I am!! Mine was inserted in 1971, so reading all / most of the posts I should be in loads of pain and thinking of getting it removed. Maybe I shouldn’t be on this site but all I have read is negative and I feel strongly that there should be some positive words. When I had to have my op I was entering the years of the opposite sex, it was very difficult as you can imagine!! I was very into athletics and held a few local and county records so my diagnoses put paid to my Olympic hopes!! (Was not as dedicated as Husain Bolt!!) I have been very lucky as I have no experience of back pain etc and I have and still lead a good busy life. I did horse riding and fell off lucky I know) I love walking in the Lakes, swim, garden and love a glass of wine. I had a physically demanding job as a hands on nursery manager until I retired and have very little pain. I know I am lucky but feel that there should be some positive words about my op so many years ago and remember that if it was not for those years people with scoliosis now would not be so fortunate. I am with you all.xx

  58. JudI Voorhees says:

    In 1994 I had a spinal fusion with Harrington rods at A.I. Dupont at the age of 18. I had an S curve; 50 at the top, 38 at the bottom. I’m 38 years old, I’ve had 3 kids and I run several times/week. As long as I keep my weight down and my core toned, I don’t have much pain. Any pain that I do have is in my neck and sacrum, I see a chiropractor who helps with those. I feel that this surgery was necessary, and it has been successful. That said, I don’t love the idea of the metal in my body, and who knows what will happen down the road as I age. But I’m going to be grateful that I can breathe and run and play with my kids in the meantime.

    • Amanda says:

      Yes Judi, exactly. I need to do exercises every day to stay upright and not stiff, but I have accepted that as being part of my journey. I love what you write. Gratitude for what we do have is where it’s at.

  59. Amy says:

    I came across this post, what a diverse group of experiences!
    I was 14 when I had the Harrington rods and fusion surgery in June 1991 at Rhode Island Hospital. I had two doctors, Dr. John Thayer and Dr. Asprinio (who I believe is now in West Chester county, NY.)
    Since the surgery I had bouts of odd pains and feelings, most of which I refer to as “low growls” with occasion “loud roars.” Some of it I recall with great detail, one specific “roar” had me lying in bed for 3 days, stuck.. literally, stuck.. took every fiber of my being to roll myself off the bed to make it to a bathroom. I went to see a doctor who (with little exploration, no testing) prescribed prescription strength ibuprofen and said everything looked normal (for having the surgery.. and not doing any thorough investigating.) I suspect, in hindsight, that he thought I was looking for pain killers..
    I’ve had 3 babies, all normal deliveries.. except for a brief day’s time in 2007, when I gave birth to my daughter. The nurses were trying to transfer me from the delivery bed to my resting bed and asked me to put my right leg on the resting bed. I couldn’t move it.. it just wouldn’t react to me trying to pick it up at all!!!! Didn’t hurt, just wasn’t responding! Blew my mind!! It did hurt though when I tried to get up to use the bathroom and the nurse basically pulled the leg down off the bed and it dropped like a rock.. I hollered!
    And here we are today.. I gave birth to my baby boy in September 2013. I had no back pain at all while pregnant, delivery was fairly easy (save for the imploding feeling of contractions.) I was fine all of that time with only the usual lower back ache that I’ve had for the better part of the last 20 years. A few weeks ago I tried to hop over the gate that goes into our kitchen, but my leg didn’t respond.. out of no where, it started happening again and then came the ache in my right butt/hip area.. it started as a low growl and started roaring within a few hours, I didn’t know how to help myself. I ate 4 ibuprofens (with food, I learned the hard way!) and did my best to get through the days.
    Last Wednesday I finally got in to a chiropractor. I’d been to one 5 years ago, did tons of good just being aligned. So she does an initial once over.. she says my lower back is “jammed” on the right side, about where I had the pain from my dead leg. Then she gets to the middle of my back and simply says “hmm, there’s lots of rotation here” while feeling along my spine and the rib cage(this is where I started to worry.) She asks me to walk around her adjustment table 3 times and stop, stare outside.. she writes a few things down and then writes up an order for xrays.

    I damn near fell when I saw them.

    It looks like my curve went back to its original position before surgery. The rods are still straight, not really aligned along my spine! It’s so freakin’ bizarre, and I’m panicking!! I don’t know how to read an xray so for all I know I’m doing fine.. but I know what I looked like in my year follow up appointment in 1992, and the curve wasn’t THIS curved!

    And here I am, trying not to panic (HA!) and read all I can between now and next Wednesday so I can see what she says..

    Reading all of your stories, I do have to say that there seems to be a pattern of sorts to surgeries prior to the late 80’s and very few stories of surgeries from the 90’s.. I believe my Harringtons were made by DePuy Spine (division of J&J) and I think mine are titanium (though not totally sure.)

    Is it possible to get my surgery details from the hospital? My xrays? How would I even go about that? Is it worth it? I’m trying not to think the worst but in my head I feel like the chiropractor is going to tell me she can’t help me and I will need to see an orthopedic surgeon.

    Thank you, All.. your stories have made me feel both good and sad, thankful, and at the same time I have recalled many of the feelings from back then.. I didn’t realize how deep I buried some of them, the feelings of resentment, being scared, not really understanding what was happening, what I’d been through, the recovery, the long road to now.. look forward to reading responses, stories and experiences and thank you, Amanda, for the original post and call for all of us :)

    • Amanda says:

      Thank you so much Amy for your heartfelt story. The hospital may no longer have your records but definitely give it your best effort to attain them, including Xrays.

      See the best in your head, not the worst! The trauma that we endured is surely still in us, though hopefully not as severe, but I believe it is so important to practice loving ourselves as much as possible, as though we were still a child who needs all the hugs and attention to know that she is really loved. Take a breath, know that all will be okay, that this is a life lesson, that our experiences help others when we share and offer assistance or just our presence, with ears to listen and understand.

      Please keep us posted on what you do. Personally, I need to do Egoscue exercises to stay the most upright/least stiff I can be. Self-care, every day, with love and acceptance.

      Thank you again Amy.

    • Kim says:

      I called the hospital (in Oklahoma) where my surgery was done. They gave me an address to write and request my records. I recommend asking for ALL medical records in your name. I told them my surgery date and only got the records on my surgery, no pre-op or post-op. They told me my x-rays had been destroyed and the records from my surgery were in California.

  60. Hi, I’m a climber. had fall L2 fractured badly and both legs paralyzed. Though doc had told I will walk after 4 months but I Stood up and walked after 11 days by my therapist. 2 rods implanted in Lumbar with 8 screws. after 7 months I’ve stiffened back! I can’t run! I want to go back climbing! I wish get them removed. I think they stop me doing normal.

    • Amanda says:

      Check out Egoscue Therapy to become less stiff!

    • Carol says:

      Salman. I had some left sided paralysis, too I cant run much anymore, I ran the Orange Bowl Marathon with my first husband and many other smaller 5 and 10Ks. We have all had to adjust to the “new normal”. it may take you five or ten or twenty years, but eventually you will. Give up and die??? No Way!!

  61. Allyssa says:

    I am extremely angry at these surgeons who did this surgery in the 60s, 70s, 80s and upon discovering that flatback syndrome is a very real possibility, did not bother to contact any of their patients and inform them about the complications stemming from Harrington rod/fusions. I am shocked that surgeons were actually permitted to continue utilizing the Harrington rod/fusion procedure in the early 90s when they already knew by that time that the hardware and procedure were faulty.

    Had I known about this earlier, I could have gotten this rod removed from my body sooner when one is younger and can heal better. Now, it is probably too late as it has been in my body for 30 years. Instead, these physicians retire and leave their patients to fend for themselves–leaving them with no physicians to turn to. I live in one of the biggest cities in the U.S. with one of the, if not the largest, medical centers in the U.S. and cannot find anyone who specializes in adult spinal complications from Harrington rod/fusion. Even if there is someone, the surgery is so complex,risky and complicated, I do not think I could even go through it. Thank you Amanda and all for sharing your experiences and voicing your frustration.

    • Amanda says:

      Thank you Allyssa for writing in and sharing. We can all pull together and help each other with information that we learn. There are some doctors listed here that are well-liked, plus some therapies. Anger hurts us more. Anything is possible, maybe you will get the rod out one day, if that is what is what you want. Maybe something else is causing discomfort. We do the best we can. I am sending you healing energy!

      • Allyssa says:

        Thank you Amanda, I am fine. I have accepted my circumstance. I don’t mind so much what was done, of course they thought they were helping. I am more disconcerted about them retiring and leaving their patients with no physicians to continue their out patient care. However, when I read some people’s stories, I realize I have been and I am extremely fortunate. So, I will focus on that and how healthy and pain free I am. The rod is just going to be a part of me. C’est la vie! Thanks for the support Amanda, you are awesome!

  62. Robin says:

    I’m a 58 year old female and had the Herrington rods with 26 screws implanted in 2011. I wore a Milwaukee brace for a year when my scoliosis was diagnosed at age 15. It lessened the curves a little but nothing was done after the brace came off. Throughout my adulthood I had pain and various treatments (chiropractic, tens unit, PT, etc.) nothing ever had a lasting effect. For a year before my surgery, I was in such severe pain that I would have to lie on the floor during meetings at work. I was unable to sit for more than 10 minutes before the pain became unbearable. I had to give up my job and tried injections as a last resort. They only provided relief for about a week and I was referred to the surgeon that does all of these surgeries in my area. After a 5 month recovery period and PT several times a week, I went back to my job as an activity director in a skilled nursing was extrememly difficult to keep up but I was determined to lead a normal life. This job that I had loved for 12 years prior proved to be very difficult now especially after I twisted one day trying to put something away and caused the disc above my fusion to bulge. Another month flat on my back helped physically but about drove me crazy. I was forced to move into a different position at work where I would not need to lift, pull, or push wheelchairs everyday. I was hoping that I would be able to continue working until full retirement age. I am afraid that I am losing that dream. The burning pain that I have had across my hip area when I sit has dramatically increased and now I am experiencing tingling in the back of my thighs when I lay down and extreme fatigue (also diagnosed with Fibromylgia 23 years ago). I also have limited range of motion in my neck and very tight muscles in my shoulders most likely due to a fall I had as a teenager. I am so tired of living with this constant pain. I can not take pain meds due to a physical intolerance of them. I have a lot of other weird physical problems and I’m embarrased by them. One would think I was 80 years old. Does anyone know of a doctor in or near West Michigan that may be able to help me?

    • Amanda says:

      Hi Robin, I don’t know of a doctor near you but I hope you find relief. I know it is so tough but I’m sure you will find the right healing tools. I would start with Egoscue to improve alignment and get your body more functional. I always feel better after doing these exercises. Don’t lose the dream! You can do it. Acceptance makes it easier. I am praying for you!

  63. rena says:

    When reading all of these comments I am so concerned and afraid. I had the surgery when I was 13 and I am 44 years old now. To be honest, yes, it’s a pain. I have clicking in joints…and a hypermobile SI joint. Tight hip flexors. Probably from spinning and bad posture. I can see a bit of this flat back and it’s just not pretty. I workout, eat well, take vitamins etc. I was always active. Pre and post surgery. And I have always been super proactive about my workout regime and strength training. Like since I was 13. I won’t lie, I have periods of anxiety that one day I will feel something scary….like a snap. But I can’t say it’s even rational. And to be totally fair, I see a Chiropractor about 3x per month and I get physiotherapy. I am going to get a round of xrays this month as I need to know how much lumbar degradation I am working with at this stage. But I am grateful as I am not in any major pain. I know for sure this is a life long journey and perhaps one day I will have it removed. I think overall it’s the stigma of having this, the permanent scarring. The feeling of being different. That’s my toughest battle. I am trying to love myself and be grateful. But some days are harder than others.

    • Amanda says:

      Hi Rena, you sound like you have such a healthy attitude – keep it going! Maybe you don’t even have lumbar degradation. Remember, lots of people without metal rods have back pain, and lots of people with slipped discs don’t have back pain. So don’t let Xrays choose your fate! Like you, I do a lot of self-care: Egoscue, massage when there’s money, yoga, lying flat on the floor to rest my back. It’s just part of what we have to do right now. I think it’s wonderful you are loving yourself. That’s where it’s at.

    • Caroline says:

      You need to be extremely thoughtful of your activities. I am 50 and still in good shape from my life of being active with a rod putin when I was 13 that spans T2 -L4. I did not have problems until I was your age(44)- and I am not meaning to sound negative but had ANYONE ever told me that certain activities should not be done then I would be much better off right now. So I will spare you all the good attitude talk- we both know that is essential and a given. Be extremely thoughtful of spine loading activities. Put your workout effort into things that will not be impactful even though now you are fine it is important. I was a trail runner- lifted weights, would do a couple of spin classes etc a swimmer.. Do not lift anything if possible over 20 lbs. NEVER do the exercise called “The Roman Chair” if your rod goes as far as mine at least…NEVER ever do the vibrating platform thing.the vibe90 etc.. I know you can- and you can without it hurting now- but take it from me you will be helping yourself later. I have had severe degeneration stenosis and arthritis right above and below this rod. I eat an anti inflammatory diet and also am only as well off as I am from the best doc I have had so far- a neuro chiropractor. I am in the process of checking into the the one thing I have avoided- surgery. I do think had I not done the roman chair, that vibrating platform thing called the vibe90 (which is great btw for non rod people) and not lifted even all the heavy groceries etc I might be MUCH better off. OH- And none of those things hurt in the moment. So no way to know it was bad until after the fact.

  64. Scott Teed says:

    I had my Harrington Rod surgery in 1974, I was 14 years old and It was at the Albert Einstein Hospital in The Bronx, NY. Dr Hopenfeld. A man with no Personality, no bedside manner or care for how I was doing. They took the bone for my fusion off my left hip. I was blind sided with this surgery, I didn’t feel anything was wrong. I was a very active kid with 4 younger brothers and 2 younger sisters. After the two weeks in the hospital on bed rest they put me in a body cast. They cut the hole for breathing and sent me home. I was still very active with the cast and I also had numbness on my left side. Well the cast rubbed right through my skin and my hip bone was rubbing against the cast. It got infected and I was rushed to the hospital with 106 temp. I was then rushed back to the Bronx to visit with Dr Hopenfeld. They took my cast off and my mother was so scarred when she saw my deformed chest from the breathing hole. I guess they put the cast on too tight. Well they decided to build a contraption built in to my new cast and attached a pad with screws coming attached to a bar that came across my chest. I was able to screw the pad down to put pressure on my ribs to hopefully put them back in to position. Imagine how I looked going back to school? A big stainless bar coming across my chest. I had to cut shirts to fit, I could not wear a shirt across, it looked like I had massive breasts. Not attractive for a 14 year old boy. That has been the extent of my issues. I have had a very active life, my chest is a little deformed, but no one knows except me. I work out at the gym and my trainer and I get a kick out the simple things I can’t do because I don’t bend like everyone else. I can’t do sit ups. To watch me try I guess is pretty funny. I have had cancer a few times and have always wondered if metal poisoning was the contributor, but nothing showed up on a Tox screen. I have often wondered about getting the rod removed, but I am afraid of what might happen. I get around very well and I know others who have had simple back surgeries have issues the rest of their lives

  65. Scott Teed says:

    What is involved in getting the rod removed? I have always been told it was not possible as both ends have been fused to my spine. This seems to me to be very dangerous. What about filings from the saws used? How do they chip away the bone? is this dangerous to the spine? Would the curvature come back? How long is the surgery? What is the recovery time? If I am not experiencing any extreme pain is it worth it? I have some discomfort, but have been able to put most of it out of my mind. I don’t even take Tylenol or any pain meds. Maybe I have been lucky. I have had the rod which is 18″ long for 42 years now. I am a healthy active 56 year old

  66. Terri says:

    I had harrington rod implant T-2 through T-12 in 1973. The rod has failed and now lower spine has pulled rod away due to severe rotation . Doctors in Spokane, WA tell me I can’t have revision surgery . I can’t live like this as in pain physically & mentally. I have osteopenia, but I want surgery as it will continue to worsen. Where is the closest specialty surgeon to WA state? I will travel but have no one to help me in recovering. I am a widow.

    • Amanda says:

      So sorry to hear that Terri. I don’t know of anyone in that area but I think if you could call the Egoscue office in California, Berkley, that would be a great start to figure out what to do. Egoscue exercises done daily can help keep the pain away. Please let us know what you decide to do!

  67. timothy says:

    Wow how come there isn’t a class action yet I’ve had them for 35 years and doctor treat me like I have the plauge

  68. Michelle says:

    Let me just start by saying I’m sorry to you all. Because I too know this pain. I had my Harrington rod put in when I was 14 at Rhode Island hospital. My parents were told I would have severe breathing problems if the surgery was not done. I lived a totally active normal life until my late 20’s after my second daughter was born. Carrying her around was the beginning of the downfall for me. I eventually saw specialists that all pretty much said the odds of more surgery were not in my favor. The pain continued to get worse as time went by. At a yearly visit to the ob/gyn I was convinced to see this doctor in Boston ma who assured me he could absolutely fix me with no odds to it. I under went a 12 hour surgery when I was 39 . ( forgive my ignorance I never really kept up on the medical lingo of what I’ve had done) but I had a wedge put in my spine to get rid of the flat back syndrome, caging and two rods to reinforce my lower back that had deteriorated and 6 inch screws thru my hips to minimize my mobility. 2 years after the surgery still not feeling a lot better I had my first CT which showed one broken rod. I sought out a second opinion back in RI. Saw three specialists ( none who could help) or wanted to help. I’ve kind of just been dealing with it. Last summer I started feeling different pain had a Ct and X-ray done to show the second rod is broken also. No one in this state wants to fix someone else’s work. I’m so frustrated and my quality of life is rapidly deterating. I’ve heard of the hospital for special surgeries and have wondered if that might be my only hope.

    • Amanda says:

      Hi Michelle,
      It has been a tough road for you it sounds like. Keep searching and you will find help. I have heard from a fellow spinal fusion patient that there is a wonderful doctor in New York who did her removal surgery. Dr. Cunningham at the Hospital for Special Surgery. Maybe it’s worth having an appointment with him? Please let us know how you do. We all send you much healing energy.

  69. aaron hilsenbeck says:

    i to have the Harrington rod in placement iam not sure about corrosion just heard about to day but i do have trouble dealing with heat and cold change of any time when it get little cold i get chills and feel kind of sick when temp get warmer i feel fine best temp is 85 to95 don’t know if this has anything to do with it .i had my rod put at age 13 i am now 40 so maybe i should look in to that any idea direction i can go would be great thanks

    • aaron hilsenbeck says:

      update also feel aches and pain in my neck shoulder and chest caving also out of place do to operation.chest pain started about 10 yrs ago my right side has been tweaked out of position do to my condition i had a 65% chance of not walking and i am proud to say i beat the odds now about 30 yrs old my pain started now like i said i am 40 and its almost constant mostly in cold, more often then not, my right side lung has also been affected about a quarter of it is dead so maybe corrosion might not be out of question being its been 27yrs since any suggestions.

    • Amanda says:

      I love 85-95 degrees as well. Hard to say if it’s connected to the surgery/rod. My thought is that the fusion is just one more stressor. I think hormones can be affected, resulting in something like low thyroid which is what I probably have, but there are so many variables. I wouldn’t worry about the corrosion aspect.

  70. Ron says:

    I had my spinal fusion back in August of 1982, so almost 33 years ago. I had it done by Hamlet Petersen @ The Mayo Clinic. in Minnesota. Everything has been fine with the exception that my right hamstring muscle has been numb for about 10 years now. Went to family doc and went thru the MRI a few times plus some nerve shocking test with teflon coated needles to determine nerve impulses. Needless to say…they say I have an impingement around L3/L4 area, but it’s not bad enough for surgery. Well, that was about 5-6 years ago, today, my hamstring is still numb and now it has moved into the arch of my right foot and two of my toes. My fusion was around T2-L1-2? I have 2 clamps as well,but only 1 rod. I had a curvature of 30* and 32*. They harvested bone from my right femur for the bone graphs. I’m 47 and today live with a lot more pain than I have in the past 33 years. Anybody else experiencing numbness issues?

    • Amanda says:

      Hi Ron, Thanks for writing. I’m not sure what’s going on but it is a journey, I know that. Is there a physical therapist in your area who comes highly recommended? He/she might have a good idea of what’s going on, or at least be able to give you ideas. Same for a medical masseuse. Please keep us posted.

    • Scott Teed says:

      I have numbness and cant remember when it started. It has been consistent since my surgery. When I was 14 I went to several neurologists and all said I was faking. My numbness is surface skin numbness. I cant tell if what is touching me is hot or cold, or sharp or dull. My entire left leg and between my shoulder blades to my side the entire left side is numb like this. It does not affect how I walk or breath. It really does affect me at all except when I find strange cuts that I can’t explain. The Doctors said I was faking because they felt it was not possible to have the full length of the numbness without showing damage to the spine in multiple places along my spine. The only other problem I have is restless leg syndrome. I have a scar on my hip which happened while I was in the cast. I had no feeling on my left side and the cast weight cut through my skin on my hip, if this wasn’t proof enough of the numbness. Any way when I had it all stitched up, it feels like a nerve is tied up in it and sometimes at night the nerve jumps like it has electricity running through it

      • Amanda says:

        I know that so much improvement is possible, even with the physical status quo (surgery/brace/cast/fusion etc). This is in the spiritual/emotional/Source world, that we can learn to tap into. I listen to Abraham Hicks and it helps me. Thank you Scott for writing.

    • Kerry says:

      I have constant skin numbness in my right upper leg. As I walk thru the day my whole leg will go numb and I’ll have to sit down no matter where or what I’m doing. People often see me sitting on the floor at the grocery store. I’ve been told it’s cause by the nerves being pinched where my discs have degenerated. I go to my Chiro once a week. It helps me tremendously and I can go longer between incidents but the skin numbness has been here for at least 6-7 years now. I’ve also had the nerve testing done.

  71. Betty says:

    I have had Harrington rods for 27 years.Before going into my problems, I must first say that I wasn’t expected to live past 33 years old.I am 37 now, and feel blessed.The funny thing is, I went to this website in my moment of weakness, but through reading these emails, I realize one thing. We are Vikings.I run a successful construction company, and out work any man in my industry, with 2 metal rods on my spine.True, I can’t carry children,my spine reacts in such a way that they die in my womb.So I have had to realize that with great power comes great responsibility.If you want to know how to make the pain stop, get ready.The way to bypass pain is through pain itself. I workout 6 hours a day.I make my body focus on more stress,therefore disabling the focal point of this disease.With this said, this isn’t a cure for our disease.I get worse every year,but at my worst, I triumph multitudes who wouldn’t even dare push themselves to success.Also,beer really works.
    I won’t wax poetic on the horrors of this disease, because I don’t need to.Anyone reading this, already knows what’s happening.
    Do I feel most days like I want to quit? Do I have anxiety attacks as the metal melts into my system,and I get poisoned?Do I have a hard time standing after sitting?When it rains, can I barely breathe?
    You know the answers to these questions-but i will tell you one thing-I’m not going down without a fight, and neither should you.
    God will never give us more than we can handle–Through our weakness,we will help others over come theirs.

  72. Liga says:

    I was diagnosed with scoliosis in 2003 when I was 13, I had 47 degree curvature and the prognosis was I would be paralyzed within a year or two. So I had the Harrington rod fusion surgery in 2004. Due to a bad fall I had a revision surgery in 2007, but they removed just a small part of the whole system. While the rods saved me from being paralyzed, I never felt okay, I was in constant pain, my body was very much aware of all the metal inside it, I had pain in my legs, even though I exercised, I felt constant exhaustion.
    In 2013 I became pregnant and welcomed my daughter with a c-section. At first it was ok, than the pain and discomfort became a lot worse.
    So, finally I went to see a new doctor who told me that about half of the screws I had in my spine were broken and the rods were not helping at all, just causing a lot of discomfort and pain. I had my rod removal surgery almost 2 weeks ago. The recovery is going well, I spent 4 days in a hospital and now I’m at home. The recovery is not half as bad as it was after my first surgery, so I’m doing really well. Doctors are certain my spine is fused and there won’t be any problems. I’m looking forward to doing all the things I physically couldn’t do because of the rods! So far so good!

    • Amanda says:

      Liga that’s awesome! I am so glad you shared this with everyone here. How great that you found a good surgeon. Thanks so much for writing!

  73. Amy says:

    Hello, All!
    Updating since my initial post..
    I stopped going to the chiropractor and started going to a gym. I’m doing a mix of strengthening exercises, pilates and yoga. It’s helping, although slowly. I started having trouble getting out of bed and then standing up straight (in the upright sense.) After about 4 hours of sleeping I become stiff, and no amount of stretching, changing positions or sleeping on a rolled up towel under my lower back helps.

    But I feel like I’m making some progress.. so for the minor irritations, exercise and generally staying in shape helps.

    I have a doctor visit tomorrow to make sure that whatever is causing my right side to lock up isn’t something more sinister. If nothing else I got lucky finding my doctor as he listens and knows exactly what I’m describing to him. He did recommend physical therapy but I couldn’t afford it at the time and seriously needed any sort of movement (the gym membership was WAY cheaper.)

    One part that I still can’t get over is the twist that my spine has done. After reading this blog I went off and looked for more info and stories. I found a paper that talked about axial rotation of the spine with scoliosis. It basically said that despite the rods the spine still has a tendency to twist. I was both relieved and bewildered by this and it totally explained my xrays.

    I love Betty’s May 9th post up there, and most days that’s how I feel. I’m fortunate that I don’t have severe problems and feel like I shouldn’t be complaining at all. But there are days when I don’t have the fight in me, days that I just want to lie on the couch and just let it all go. That doesn’t work for me on the better days though and all I want to do is fight and win :D

    Will check back in again, and more frequently.
    Keep on keepin’ on..

    • Amanda says:

      Hi Amy. You and I are in a similar situation. I found it so helpful to read what you wrote about axial rotation. When you look down at your ribs, does one jut out front further than the other side does? My left ribs jut out more, so I believe axial rotation has happened to me as well. It didn’t used to be like that. Please send that link if you think of it. I have to do daily Egoscue and Original Strength exercises to not feel glued together and leaning to the left with one leg shorter. I would do even better with more maintenance but there’s much to do each day as you know!

      I believe that we are like this for a reason, and it’s to help others feel better through our experience. It’s tough sometimes because it seems life would be easier with a body that didn’t need so much maintenance, but still we have much to be grateful for.

      Thanks again and keep in touch.

  74. jemima evariste says:

    please help me…I am 15 and had this surgery done in 2012…I am having pain in my upper back these days…I cannot sleep properly…plzzz help….I hve a lot of questions….for example should I be worried when its cold?? what are some excersises that I can do to stop the pain…and do you think its best if I hve the rods removed/??? if yes how soon?? please help…please keep in touch……I am to young to handle this…please message me..

    • Amanda says:

      Hi Jemima,

      What does your doctor say about your pain? Is the pain near where the rods are? How many rods are there? When did the pain start?I would first try to find out the cause of the pain. Is it being caused directly or indirectly by the fusion or rod? Be completely honest and descriptive with your doctor/surgeon so that they can best help you, then write back! I am sending prayers your way Jemima.

  75. I had Harrington rods fitted in 2010 after a spinal cord injury worsened an underlyiing scoliosos. The minute I had it fitted I was in constant pain.I went back several times to the surgeon and was given loads of reasons as to why-you are too thin. You are imagining it. You are doing too much. You name it ,he gave it! I put up with it for 4 years and then finally revisited my surgeon for the last time. He literally laughed at me(yes he really did!) and told me my memory was”playing tricks on me” and I was in worse pain before! He said if he removed the metal work my spine would collapse straight away. So, after a somewhat (4years) protracted “recovery” from the surgery I had to admit defeat and take early medical ill health retirement from teaching and was left poor, in constant pain and limited.By 2pm my day was done and all I could do was lie and rest.I was in constant pain and felt exhausted all the time. A teachers charity donated an electric chair but the area where I live is so bad for wheelchairs that it was a dangerous experience using it outdoors! I got a Canine Partner in 2000 who changed my life. She helped me with daily tasks but most of all she encouraged me to try walking again so I could take her out. She would grab my phone,take off my socks when needed and generally let me know she was there for me! We managed some bad times together!
    In 2014 Becky Dutton from the website Understanding scoliosis encouraged me to check my metal levels through the Melissa website. That was a real eye opener as the results showed thatI had become highly allergic to Nickel and had very high levels of cobalt and chromium in my blood. At that point I noted on the website that so many people were suffering with the same symptoms(burning in groin leg pain numbness etc) after having Harrington rod implants. After ALOT of research I found a very open minded and skilled orthopeadic surgeon at the Spire Hospital in Bristol UK called Mr Harding. For the first time in 8 years a surgeon asked ME.. “what do you want to happen?”. I told him and he said there was a 10% change of my spine bending again. Ten percent ! Thats a 90% chance it wont! So two weeks ago I had the Harrington rods removed.(from T2 -L2). Its very early days but already the burning in my groin has mostly gone and my legs don’t burn any more. Its true it painful to walk right now but its 2 weeks post op and theres alot of bruising internally no doubt (my bum was blue for a while!) and if I can overcome my naturally impatient nature I know that I am heading for a better future. Living in constant unremitting pain is a real @@@@@. It affects not just you but your family too. My son was 14 when I was first injured. he ended up pretty much dropping out of school and became ill himself -the stress triggering an underlying genetic problem. It was just too harsh for him to see his active mum so disabled. It took him 7 years to get back on his feet and he is now starting a new career in October . Constant pain can affect your psyche and can drive you to dark places on a bad day. Unless you’ve been there its hard to explain.Add unsympathetic surgeons and its intolerable. I still have some pain (my cervical discs were damaged by the metal work) but on a scale of 1-10 ,It used to be about 50 and now its about 3.
    He made a cut top and bottom rather than along the whole spine and the wounds have been painful but its post -op pain and I can bear it as I know its limited. Even now in these early days I don’t feel so constantly exhausted and unrefreshed after sleep like I used to. For the first time in 5 years I was able to sleep on my side! Im glad I made the decison. I was terrified as I hate hospitals now(had six spinal ops in my life) . However it was the right chose for me for sure.
    My advise would be if ,like me, sometimes look ahead in your life and could only see pain,do be as proactive as you can – don”t take no for an answer.Be a tigress and fight back. I was laughed at when I wanted it removed. I accepted it for 4 years and then fought back and found a more skilled orthopeadic surgeon. The MELISSA foundation is full of stories like ours. If you can afford it (its pricey) then get tested.Your blood results might shock you into action (like me). The implant field are behind in terms of metal allergies and in my belief should test everyone before surgery. Goodness if I want a tint EXTERNALLY the hairdresser does a patch test a week before going ahead! Yet we have several feet of metal work fitted internally and just have to cross our fingers and hope! The fact is my metal work was titanium based and no nickel was apparently present(other than possible cross contamination in factory) yet I developed a severe allergy to nickel (used to wear alot of nickel jewellery with no ill affect) and the levels of cobalt and chromium in my blood speak for themselves. It cannot be explained (I sadly wasn’t able to keep the removed rod for testing) . However Im going with my blood results. I also going with my pain levels now.
    i wish all the greatest of ..not luck no… Id like to say .. tigress power. Believe in yourself and what your body is trying to tell you..Don’t be fobbed off like I was for years. If you ,like me, have to deal with unbearable pain then the chances are something isn’t right and may be fixed but you will need to find the right guy for you-most importantly one who listens !
    Godbless to you all. I really so understand and my heart is with you.

    • Amanda says:

      Wow Mandy, what a story. I am so glad you are getting better and better. I love your takeaway from all of this suffering: believe in yourself and what your body is trying to tell you. The work you’ve done is so admirable. Your son and everyone around you surely sees that and has been impressed by it. How wonderful that Becky Dutton and MELISA helped you on your journey. I am sending you much positive energy for a speedy recovery back to feeling all good!!

  76. Amy says:

    Ok, so lots to share..

    At my last appointment, which just happened to be a bad day for me, I was tilted to the left while walking into the doctor’s office. He saw it and said “I almost hit the floor when I saw you walk by.” A couple questions, a quick glance and he said it’s a spasm. I kinda knew that, I’d been having little spasms for over a year now and thought a little exercise and core strengthening would fix me right up.

    He gave me 3 prescriptions: dexamethasone (a corticosteroid), diazepam (a muscle relaxer) and Tylenol 3’s since most medications of that sort make me violently ill and well, it’s hard enough to be ill on a “good” day. Worked like a charm, I was straight, I could get out of bed, I was finally able to sit in a chair for a little while and start working on my miniatures again! I made two things for my “husband’s man cave” in my dollhouse. I felt like a million bucks!

    I was downstairs in my craft area, not doing anything nutty, just sitting. I got up from the table and walked about 10 feet when I got hit with a spasm that was so sudden and so shocking that I instantly locked up and the only thing that saved me from hitting the floor was a doorknob I grabbed and held tight for the duration of the spasm (about 15 seconds.) It blew my mind.

    My doctor was out of the office on vacation until July 17. I think it was the 3rd of July when this spasm happened. I still had muscle relaxers and tylenols so I kept taking them as prescribed. Went back to see him on the 17th and he gave me a new round of dexamethasone and diazepam but changed the pain pill to vicodin (sp?).

    That worked even better. The spasms stopped I was feeling fantastic, the muscle smoothed out, I was doing very light stretches.

    Today is the second day after the last corticosteroid. I was begging for mercy all morning. Tried to get out of bed and I was totally stiff. Managed to roll across the wall into a semi-upright position. And then came the spasms. The first couple were small, light.. The third made me scream like I’ve never screamed before. I just wanted to lie down and let it all be over. My toddler (almost 2 and going through a very clingy phase this week) put his little arms up and asked me to pick him up. I couldn’t even get down to hug him. I lost it, bawled like I haven’t bawled in a while. I can’t have this.

    Luckily I had a refill of the dexamethasone on hand and sent my husband out right away to fill it. I’m not totally stuck but I did get stuck sitting on my front stairs for an hour because I simply couldn’t move. I was waiting for him to come back because he was going to just drop off the pills but ended up stuck on the stairs waiting for the steroid to start to work.

    Back to square one and calling the doctor tomorrow.. it seems like each treatment is literally making the spasms worse :(

  77. Staci says:

    I had Harrington rod placement along with a compression rod in Feb of 82. I have developed stenosis in L4 and L5. I don’t have pain on a daily basis. I have been doing Crossfit for several years to help strengthen lower posterior chain to increase stability due to stenosis. However, i have considered rod removal as I struggle with mobility and flexibility.

    • Jackie says:

      I had a Harrington rod implanted 35 years ago to correct scoliosis L4 – L12. All those years and two children later, my experience has been fantastic – pain free. However, over the past year or so I have been experiencing severe lower back pain while walking, sitting, lying, standing and so doing simple chores became quite difficult.

      Eventually I saw a surgeon, x-rays were done which shows that where the rod ends at L12 the rotation of the spine continues into the L1 to L5. I have been diagnosed with adult scoliosis with spondylosis. Surgery would entail removal of rod – the xrays show a shadow over the rod which is bone growth. So removal of rod, de-fusion of L4 -L12 and then implanting rods which will extend through to the L5 and possible the sacruml since there are signs of arthritis in the L5.

      I am currently wearing a TLSO brace to give support and stability and physio therapy twice a week. My concern is that I have never met anyone, until these posts that have had similar experiences with the Harrington rod and I am very skeptical about the procedure – complications, whether there will be a reduction in pain and discomfort, and the recovery process.

  78. Kathy says:

    Hello I’m 46 now had Harrington rods placed when I was 15. Now found out I have breast cancer and need a MRI but they won’t do it cause of the rods. I don’t know what type they are or were I had it done cause my mom and grandma just passed and the new all that. I have no records. It was a big hospital in New York State not city named after a women this I remember and my doctor was French. Has any one had a MRI with rods that were placed in the 80’s?

    • Amanda says:

      Hey Kathy. Maybe you can look into thermography? It’s a non-invasive imaging technique that will tell you some more about the breast activity. I haven’t had an MRI – if I did I don’t remember – maybe another doctor will do this for you? Perhaps someone here will think of the hospital. But from experience, my hospital got rid of older records. I wish you luck Kathy!

  79. Debra Walker says:

    Had harrington rods placed in late 60’s, one “popped off” defective not even a year later and was replaced. Also had fusions from the left hip. Had no problems with them but my surgeon believed they shouldn’t remain in so in 1970 they were removed. Now I am 62 and can hardly walk, can’t stand for any length of time and once I have sat for a little while can hardly bear the pain of getting up. I am significantly over-weight but I don’t know how much losing weight would help after reading up on things although I certainly am trying regardless. I am going to an ortho dr this month just to see if he can suggest anything to help. I believe the pain and lack of mobility is causing me to experience chronic depression. Anyone coming on here that was in Harry Anna Crippled children’s hospital, Umatilla, FL in the 60’s and early 70’s please go to FB by the same name.

  80. […] Calling All Harrington Rod, Spinal Fusion People – Do you have a harrington rod? There were thousands of us in the ’80’s getting these things in hospitals. An event, actually, that I’ve never really fully … […]

  81. Paul says:

    Had rods in 83 in cinti. By dr r florez daily problems. Since removing The rods don’t. Justify the risk as we all know they become incased in bone and chipping. The bone away could leave any of us worst off . if any litigation. Comes up about the Rods I’ll. Be the frist one to look into. Till. Then hope anf pray. And meds .meds and more meds

  82. rhonda says:

    Hi, I had surgery in 76, age 13. My rods go from t2 to l4 and a rod on my ribs. I have been having the sensation of the rod on my ribs moving ever so sightly. I have been experiencing a burning sensation where the rib rod attachea to the spinal rod. I wonderes if that could be a symptom of metal deterioration. My xrays shw no sign of breaks. I also have red marks on my palms, below my pinkie finger to my wrist. I read it could be a sign of being toxic. My liver tests came back fine. I wondered if anyone else had anything similar…

  83. Allie says:

    I suffer daily. I had Harrington rods put along my spine in 2000 when I was 14. I have chronic extreme pain that stems from my head, neck, and back to my hands, hips, pelvis, legs, and feet. I have been diagnosed with several autoimmune diseases, an immune deficiency, pseudotumor cerebri, and the list goes on and on. I have had high chromium levels in my blood since my mid 20’s, and one of my rods is broke, and a bolt is loose in my spine. I lose feeling in my hands, legs, and feet constantly, I have severe narcolepsy so I am extremely tired all the time, and I have a headache every hour of the day. I have moved my family across the country to find doctors that even want to “touch me” because they all run when they see my back. Even with back surgery at 14, my spine is still in the shape of an S, and I’m regularly told that I need to just get used to the pain and stop my search of more answers. I’ve been diagnosed with meningitis, and even two years later, after brain surgery, I have high white blood cells in my cerebral spinal fluid, in my blood, and in my urine. However, no one can tell me why. I have been anemic since I was 15, with no reason why. It burns when I pee and has every day since I was 16, and no one can tell me why. I see 16 specialists, hoping that someone will help me. I suffered a stroke at 21, and I have had a cognitive decline and detrimental memory (long & short) problems that doctors will attribute to any one of my autoimmune diseases. I have back pain every minute of the day, and at 30 years old, I can barely go up stairs. I am so sick of living like this. I have researched everything I have including the high levels of metal in my blood, and a lot of my findings are linked to my back, the rods, scoliosis, and so on.

  84. Sarah says:

    I underwent spinal fusion surgery with two Harrington rods in 2000 to correct scoliosis at the age of 15, pretty much from my neck to my hips. I haven’t had any major issues, since then, I’m 30 now and I sometimes feel tightness around my spine but never any pain. I went back to dancing and regular activity following the surgery. I’m an avid hiker and walk every day.

    I recently discovered yoga and while I absolutely love it, I’m terrified I’ll injure myself. I don’t push beyond my limits, if I know I can’t do something I don’t try it. Being so limited is difficult as I know I can’t even attempt some of the more challenging twist and backbend postures. I remember to breathe, and do what I can, and my muscles do feel stronger and my anxiety is better. But I am always afraid, and when my back begins to feel some tightness I think “Oh god this is it” and imagine broken rods and loose screws digging into my spinal column. I am worried about what the future holds, as far as corrosion and breakage. I am happy to find this site and see so many others with this condition, however it saddens me to see so many sad stories. it seems like those of us with Harrington rods are so few and even on the internet there aren’t many sites where we can go, and most people are unfamiliar with my surgery and condition which makes it hard. I thought I was doing the right thing at 15 but now I’m so uncertain. I’m trying to remain positive, take it slow, and be glad that I haven’t had any major issues thus far.

    • Amanda says:

      Sarah, the yoga is awesome. I actually teach it, even though I can’t bend my back either. Sounds like you are doing the right thing by taking it easy, and doing what you can do. It sounds so good for you! I mean I know it is! It is sad to read sad stories; I’m trying to figure out a way to help people without being an experienced orthopedic surgeon myself. There are many therapies that can help. But if the pain is severe and coming from the hardware, which it sounds like it is in a lot of peoples’ posts, then doctors need to be seen. And I say keep trying til you find one you like. Thanks for writing.

  85. Melanie Davis says:

    I got my rods in 91, experiencing the same problems listed on everyone’s post. I have no health insurance and want these things out! 😞 I never wanted them in the first place. Can someone recommended a Dr. That successfully removed theirs and what I can do about health insurance? I have 5 kids, single mom. Ex husband abandoned us 7 years ago, no child support. Children are on Medicade. I don’t qualify because I work. Unfortunately I don’t get benefits …

    • Amanda says:

      Hi Melanie, thanks for writing. I’ve heard a couple of people say that they really enjoyed working with Dr. Cunningham at the Hospital for Special Surgery in NYC. Maybe you guys could have a visit with him to see what he says about your situation? I’m sending you healing energy Melanie.

  86. Lora says:

    I had my surgery in 2000 from base of the neck to the low back as far as the surgeons could go without making it so I couldn’t walk. I kids were still small then and since my husband works away from home all over the US, traveling constantly, I dropped the meds when I returned home to stay lucid to protect them. The house was a mess naturally and got messier. I was in constant pain and unremitting pain for 5 years and started dealing with the emotional side of it the 6th. Not there yet but not giving up either. My husband still has his job and my kids are grown. I found your great site as I am searching to solve issues in an attempt to have more quality life and am searching for something to do with my empty nest brain and hands! I have itching that has gotten worse over time on my legs, edema, sciatica, knee joint and ankle pain, if I go over my quota of movement per day I end up horizontal for a few, There are good days and really bad ones. I know I’m all over the place here. I have experienced spaghetti leg and arms, and extremely slow walking. I made an appt. to see what’s up. Now I’m going to check out the metal issue. I can’t believe I’m posting this. My first ever! Thank you for what you are doing for us! Also I wonder if Harrington rods have any links to Autism? One if my kids has Aspergers and the other “has tendencies”.

    • Amanda says:

      Hi Lora, thank you so much for your comment. You have certainly had a time. I think it’s wonderful you’re looking for a higher quality of life. I believe when we look, we find. Yes metals play their part in the total toxicity issue that is causing so much ASD and autoimmune issues. Please read Kerri Rivera on the subject. Kids can be healed from the symptoms knows as autism. Also, detoxification on a daily basis is what I try to do through various means. I am sending you loving energy Lora!

  87. Chris says:

    Hi there,
    I had posted what had happened to me but now I don’t see it anywhere. Did I not fill out something correctly?

  88. kay says:

    never knew i had Harrington rods implanted inside of me. I have no scars that will show the rod implants. When I passed through the security doors it would beep not knowing why. My parents would of told me if I had rods implanted inside. Until one day I went to the hospital to pick up my medical records and X-ray when I notice these strange rods on my L2-L3 verbre spinal and wires across my shoulders. I was so angry with my doctors and Specialist for not telling me. I had nothing but headaches and health problems. Not sure what type of rods they are cuz in the report it would say ” Strange Metallic Rods ” I even went to see a orthopedic and he told me that everything is fine it’s all in your head. From hospitals to different doctors I would get the same answers and all the report would come back as ” Unknown metallic Rod in L2-L3.

    • kay says:

      never knew i had Harrington rods implanted inside of me. I have no scars that will show the rod implants. When I passed through the security doors it would beep not knowing why. My parents would of told me if I had rods implanted inside. Until one day I went to the hospital to pick up my medical records and X-ray when I notice these strange rods on my L2-L3 verbre spinal and wires across my shoulders. I was so angry with my doctors and Specialist for not telling me. I had nothing but headaches and health problems. Not sure what type of rods they are cuz in the report it would say ” Strange Metallic Rods ” I even went to see a orthopedic and he told me that everything is fine it’s all in your head. From hospitals to different doctors I would get the same answers and all the report would come back as ” Unknown metallic Rod in L2-L3.

  89. Kerry says:

    Hi! I had my rod placed in 1982. I’ve been going down hill fast over the past few years. I’m 48. I can not do my daily activities. My right leg goes numb. I’m fused all the way down except for my last 2 vertebrae. I’m in constant chronic pain in my lower back. My discs or gone and I have spinal stenosis. Of course the flat back syndrome. I use a walker w a seat for longer distances and wheel chair on really bad days. I have tons of other chronic conditions as well. The list is very long. I do believe most of my problems are from having the scoliosis surgery. I’ve had 4 opinions as to my options at this point. I found a doctor in Canton, Ohio who specializes in spinal deformities and has wrote papers and given lectures on the effects of the Harrington rods. His career has basically been correcting us who have had these rods put in. I’m scared to death of having surgery again but I can’t live like this. I used to love to dance and take walks. I can barely make it to my car from the house now. I’m planked forward most all the time unable to stand up straight. He said I would need 2 part surgery. Total would be anywhere from 10-16 hours so they would do it over a 2 day span. He said my choices were to continue to live this way or have surgery. He had done many and I feel very comfortable with his expertise on the subject. It’s just that a two day surgery with a 12 month recovery time scares me so much. The surgeries names are a big mouth full. The would remove my rod and after I will be able to stand straight again. It’s just so complicated and a serious procedure. I would probably need a blood transfusion and be on a ventilator after the second surgery for a day or so because of being under for so long. Anyone else out there who has had anything like this done? I’ve never even heard of 2 day surgeries. That in itself scares me.

    • Amanda says:

      Hi Kerry. If I were you I’d look into Egoscue Therapy. I’m sure it can help you. Find a certified Egoscue therapist and do the daily exercises and things should get better. Keep us posted!

  90. Blair says:

    wow. this is so amazing to read comments of people having had harrington rod surgery and also from the same hospital that i had it done back in 1995. it is too bad back then, the internet did not exist as it was very lonely. i think most people were uninformed of the situation and just had to do whatever the doctors told you to do.

  91. Scotty Mac says:

    My scoliosis was caused by a bout with polio in 1954. In1966 at age 14, I was given a choice of Harrington rods and spinal fusion or wear a Milwaukee brace. I went for the Harrington rods knowing my back would be fused. My Harrington rods and fusion were done by Dr. Harrington in Houston. I was the third patient he performed this surgery on or so I recall. The spinal fusion was done using cow bone which explains why I moo sometimes. Later procedures used the patients bone. Previously to the surgery I had worn a series of back braces from age 2 to 14. After the surgery I did not wear a back brace again. Over the years my spine has gradually slumped and my rib cage on the right side digs into my side causing discomfort. I am wondering if I should have a back brace made and start wearing it again to help slow down further curvature. Otherwise, I have not had problems so many have had with the rods. The rods have never broken although I thought they had when I did something normal people do but hook and rod people like me should never do.

    • Amanda says:

      Thanks Scotty for your comment. Nice to hear you moo sometimes! Re: slumping…I bet you can do consistent exercises/positions that will better align you over time. It’s never too late. Have a one on one with an experienced Egoscue therapist and see what they advise…

  92. Cindy says:

    My Harrington rod has been in my upper spine since 1975 lower rod was removed in 1983 because I broke it lose and the last fusion. Just in recent years I have pain by the upper connection of the rod. My biggest problem is the degeneration in the good disks that are not fused. Muscles tighten to the point of pulling my neck out of wak. It causes headaches night sweats dry mouth and more. I have found I have to work real had to keep muscles as lose as possible and really in tune with my body

    • Amanda says:

      Hi Cindy. Yes something good to come out of this is that we take better care of our bodies. I remember seeing a bodyworker/masseuse who taught me about Active Isolated Stretching and she said that daily stretching (and regular massage) is simply a necessity for any body, but especially compromised ones like ours with fusions/rods. You may enjoy hearing what Marjorie has to say as it will apply to your body too. Here’s the post and video.

  93. Tina says:

    I’ve had my rod since 1985. I was 13 and had it done in Toronto to stop the scoliosis. I haven’t had any major problem with it other than some stiffness. In 1983 when I was 11, I was diagnosed with spondylolisthesis and had several surgeries to help correct it (which didn’t really help, although my lower vertebrae are fused together to prevent it from progressing.) It’s believed that the spondy cause the scoliosis, or at least that’s what one of the doctors said.

    Today I walk hunched over (due to the spondy) and had a recent Xray done of my back to see if the rod was still in place, which it is. I can’t even imagine the pain of having one breaking loose!!!!!! I also have a metal rod in my femur, which I received after getting into a car accident at 16.
    My leg actually bothers me more than my back. I never really thought about having them removed.

  94. stacy says:

    I have kyphosis and had Harrington rods put in when I was 16 in 1987. I have had the lower
    Rod removed in 1993 due to it pope out of the spine from a fall. I have only had pain from arthritis
    but now I have an area of my scar that had an absces so my doctor put me on antibiotics cuz he
    Thought I had cellulitis, but after the first ten day of antibiotic didn’t kill the infection he put me on
    another antibiotic. Then I went to the hospital and had them lance the absces and they did a culture
    come to find out I did not have a bacteria infection but they still put me on antibiotics. After ten day
    of that antibiotic I had to go back to the hospital to have it lanced again and another culture done which
    came back as the first one. The Dr wanted to know where my rods went down to on my spine so he
    did x-rays and said that where the absces started is right where my rods are so he said that my rods are
    infected and now I’m waiting for my referral to be approved by my insurance company so I can go to Portland Oregon to OHSU for removal of my rods. I’m still getting yellow and green discharge coming out of my scar a month after the hospital first lanced it

  95. Destiny says:

    I have Edward Harrington rods at L2-L3 from a car accident when I was 14, since my mid twenties I have had extreme back pain, now it is degenerative disc disease and all throughout my spine is becoming weaker as well as a reverse kyphosis or lordosis is taking place at one area.

  96. Tammy Pope says:

    I had my first surgery in 1980 when I was 11 years old, then my second one in 1990 when I was 21, my third, and most horrific in 2010 when I was 41, and the last one when in 2012 when I was 43. I seriously was beginning to believe that I had been cursed at birth. I was diagnosed with severe roto-scoliosis, and then degenerative disc disease. I have rods on both sides of my spine from the top all the way down, pins in my hips connected to my spine to keep it from twisting, and three triangle shaped titanium rods through my left hip under my spine to support it. I wish I could share pics of my x-rays so you could see it. Has anyone else had to have this much surgery? I also had to have bone marrow transplants, and bone graphs from the bone bank, is that normal?

    • Amanda says:

      Hi Tammy. Maybe someone will have experience with this and write you back! You have had a lot going on. I think it’s awesome you’re looking for answers! If you read through these pages you’ll find some recommending a Dr. Cunningham in NYC.

  97. Pam Kennedy-Baker says:

    Spinal Fusion: Summer 1978. Dr. Howard P. Hogshead at Hope Haven Children’s Hospital in Jacksonville, Florida.

    Attempted an MRI last May due to severe headaches. Experienced uncontrollable vibrations on the left side of my body only. Terminated MRI. Three weeks later, admitted to ER for what we thought was a stroke – unable to speak, unable to walk (jello legs) – I could say things in my head but was unable to communicate them. ER concluded that I was having an anxiety attack. I called BS on that because I have suffered from panic attacks off and on for the past 25 years – which I have never, ever had one that extreme.

    Since last year, I have had a plethora of problems. Been suffering from hives on my chest and face for the past 3 years, dermatologist biopsied and determined it was Tumid Lupus Erythematosus. Lupus of the skin. Ok, we can deal with that – limit my time in the sun, increase my D3 and try not to stress out (HA!). Next was RA and 5 Rx’s (which I am a non-compliant patient when it comes to prescribed drugs), instead I have turmeric tea x2, green tea, CBD oil and a balanced diet. Lastly, COPD and a drop in o2 while sleeping – what the what?? Hence, the morning headaches – so now I have oxygen therapy when I sleep. Easy to breathe in, hard to exhale. Again, non-compliant on the meds – I know, I know….but when the side effects are 10x worse that my original complaint – why would I ingest them? What’s the less of my two evils?

    I have never in my entire life felt so broken down. We moved from Florida to Tennessee 9 years ago to pursue our dream of having a farm. We raise our own garden, beef cows, milk cows, rabbits, chickens and pigs. We are pretty active – or I use to be. Since having this MRI, I have had constant pain in my lower back which radiates pain to my left groin area straight down to my left ankle. I’ve had some off and on edema with this. Also I’ve had pain between my shoulder blades that has my pinky and ring finger completely numb on my left hand. My PCP says that I have probably damaged the nerve by fencing – since it started the day after we were making fence repairs.

    I’ve read this entire thread and I have not seen anyone who has had trouble with a MRI and the Harrington Rod, yet everywhere I call to see if they would do a MRI on me – they say no. Has anyone else had this trouble? My rod is T1 – L3, fused with my right hip bone. I have had no serious issues with my back other than the normal aches and pains I’ve suffered ALL my life. What do y’all recommend? Where should I go from here?

    Reading about the rod corrosion kinda freaks me out considering how long I’ve had this implanted. I am definitely going to mention this to my PCP and see what she recommends.

    I’m praying for ALL of us to have some relief and comfort – and answers!! We’re all in this together!
    Please update and respond whenever possible! Thanking you in advance for your advice!

    • Amanda says:

      Thank you for writing and sharing your story. Don’t worry about corrosion. I no longer do. Because I don’t plan to take my rod out (fused to spine), I will not bother worrying about corrosion.

      Sounds like you’ve had breathing issues. Look into Buteyko method. I think it may help you and the myriad of symptoms including anxiety. Free videos on youtube and low cost book on Amazon called Close Your Mouth. Let us know.

      Also, since you’ve had (non-ionizing) radiation from the MRI recently, maybe researching Modifilan will help on this site. It was used on people affected by Chernobyl.

      Your farm sounds amazing. I have no doubt you will be working on it again soon!

  98. George Clark says:

    Amanda, thank you for having this group post. I will check out Egoscue Therapy. I had my Harrington rod since 1972. and it’s been very tough. Reading all these stories of bravery is moving and helps us all.

  99. Amanda says:

    George, I feel that Egoscue will only help. See an experienced Egoscue therapist. It helps me a lot. Always know it will get better! Even if you don’t know how!

  100. Margo says:

    WOW! Just found this site as I was searching for answers for my symptoms. I’m currently jumping through the hoops of being passed from one doctor to the next.
    History: Scoliosis surgery with Harrington Rods and 14 hooks placed in 1982 at age 17. Now 52 and been in dentistry for 30 + years. Aches and pains came and went…chalked it up to career and age. Now, have had non stop, sleep interrupted pain in left should. Both arms go numb, although there is a throbbing pain in my left shoulder. Sciatica acts up some, but I’m usually able to ease that with stretches.
    Haven’t seen any post (I admit, I haven’t read them all) about shoulder/arm pain. Can anyone relate?
    Yes, I have had nerve testing done and test fine…no carpal tunnel.
    Balance hasn’t been great and I bump into things easily. Drop things….a lot.
    Would love to hear if anyone can relate…feel like i’m getting sent from doctor to doctor because no one wants to treat me when they find out I have harrington rods.

    • Amanda says:

      Hi Margo. Do you feel that the rod/fusion is at the root of the problems or could it be unrelated? I usually find that people who have localized symptoms near the rod might be more likely to have that as a cause, but for the rest of us it could by diet/heavy metal/chemical toxicities. Being in the dental profession, have you researched how some people have trouble removing mercury from their system? This happened to me when I got my amalgams out. I have written on this subject. Anyway, maybe you can check out ‘dropping things’ on, and also find an Egoscue therapist near you for body pain…could help!

  101. Sarah says:

    I’m so glad that I found this website. I have two Harrington rods that were placed on both sides of my spine in 2001 when I was 10 years old. They also fused my spine with a piece of my right hip. I’ve had minimal pain, usually when I lay down at night is when it was the worst. I worked in the prison system for about a year and even with a very physically demanding job like that I was fine, no major pain. Now at the age of 26 I have a corporate desk job and severe chronic pain every day. In the past two weeks it just consistently gets worse. I go see a massage therapist once a week or once every two weeks and it helps for maybe a day, but then I’m right back to the pain. I’m to the point of wanting to be on pain management because I’ve tried literally everything with no relief. I’m really scared to have the rods taken out because I remember how painful the recovery was after having them put in. I feel so miserable….please someone give me advice. I’m at a loss…

    • Amanda says:

      Thank you Sarah for writing. I think it could be helpful to look into Egoscue therapy (find an experienced therapist) and ditto for an Original Strength therapist. Those two have helped me a lot. Also check out Our Flatback Syndrome group on Facebook; some people get help there. There is hope!

      • Sarah says:

        Thank you Amanda. It’s good to know that I’m not going through this alone. I’ve had a rough couple of weeks. My primary care doctor referred me to pain management and the clinic told me there’s no guarantee of anything. I feel like I’m slowly losing hope, I can only be strong for so long. I’m just really scared, scared about a lot .

  102. Rick Gibson says:

    Hello everyone. My name is Rick. I had Harrington rods installed at Gillette Children’s Hospital in Minnesota on 2-2-83. I have T1-L1 fusion with stainless steel Harrington Rod distraction rods from T2-L1. I had a double major thoracic pattern with a 27 degree high left thoracic curve, 44 degree mid thoracic curve and a 28 degree hemilumbar curve.

    I’m 49 I turn 50 in December of this year. I wanted to share my story also. I’ve lived a pretty good life since my surgery with minimal pain and am thankful that I can say that my surgery was a success. Yes I have endured back pain for several years now but, I’m confident that some of the pain is from my surgery and also from aging. I don’t know what a normal back is like. Lol.
    Over the last four years I’ve been seeing a chiropractor which has been life changing for me. Last year I seen a spine specialist and had ct scans done out of my concern for my back and the increase in pain. I also wanted to know what my future would be like with these rods in my back. I asked the doctor if I would end up in a wheelchair eventually. I drive truck for a living at a local mine for the last 18 years. Both the spine doctor and my chiropractor suggested for me to find a different line of work well easy to say hard to do. They were concerned about my quality of life when I’m older. They both suggested I keep active and lose weight which I have done. I’m still a little overweight but the weight I have lost has helped. My pain is mostly in my lower back some upper I watch everything I do like lifting anything. Also standing can be a pain. It seems best if I keep moving and work through the pain. I hardly take anything maybe just aleve or ibuprofen something simple and only if I have to. I’ve told every doctor that I’m not interested in them prescribing pain pills. I’d rather deal with the pain than take anything like that.

    I still 4 wheel, snowmobile and some downhill ski. I take it easy tho I drive and downhill ski like a grandpa which I am. Hopefully I can maintain doing the things I love I have 12 more years before I can retire. Hopefully I’ll make it. I’m going to certainly try. Well that’s my story with my back. I just wanted to share.

    • Amanda says:

      Thanks so much for your story. Sitting a lot gets things out of whack but there’s an easy thing you can do that helps a lot – at least it does me. In a private place, crawl on hands and knees for a few minutes as a break. This puts the natural curve back in the back (even if you’ve had a fusion and your back is flatter than most, it will still ‘undo’ some of the flexion that happens in sitting. Look into Original Strength videos on youtube. Helpful! Thanks again and stay strong. You are so wise to say no thank you to pain pills!

    • Lisa says:

      Hi Rick!

      My name is Lisa, I am 54, and was fused with a Harrington Rod/Distraction System in Houston, Texas circa 1985 at 21. My curve was an S curve of 50/35. I am fused T4-L2 with a subsequent cervical fusion at C-6/7. I still have a decent size curve in my lower back still and have been in chronic pain in my neck and lower back since 15 Years after initial surgery. I had my Harrington Rod hardware removal in 2003 due to intense pain with my hardware being painful to the touch, aggravating muscles and nerves in my neck and scapula and the amount of bursa sacs were ridiculous making lumps you could see. They took out all the hardware along my fusion along with inspecting the fusion. One screw was loose and that alone was causing a lot of pain. Yes, it was an intensive surgery and I didn’t know when I went under if I would just have the hardware removed or if I would have a revision surgery. I went to 4 of the top revision docs (at the time in 2003) to get their opinion and they all said hardware removal was the first step. I only weigh 115 and I’m 5″4 so weight has not been my issue and I have tried it ALL and spend 10s of Thousands of dollars trying to get relief for my low back pain from injections, to years of PT, to yoga (as much as I can do) pain meds etc. Sitting is excruciating, I take a cushion with me everywhere. Driving and travel is so hard and frustrating! Walking for exercise aggravates my sciatica even after intensive stretching. I noticed your comment about chiropractic. That’s such good news chiropractic has been a good tool for you! I have always been too scared to do it because of my fusion sites at T4 and L2. Is your chiro able to isolate treatment areas without aggravating the L1 fused ending you have? I have PTSD from a very inexperienced PT who put my neck in a pretty aggressive traction machine for a bulge at c/6-7 a long time ago. It irritated my T4 Harrington rod junction so bad, I was in bed on serious pain killers and muscle relaxers and out of work for 6 weeks back in 2002. However, there are often times my low back hurts in such a way I think geeeee chiropractic sound really good, lol. Any of the traditional therapies that I try seem to try and help a little do not last long due to what I call, “a HR structural imbalance nightmare” from being solid at so many levels, no saggital balance and still have my hips off with the curve. I’m not far enough off to be considered true surgical fallback though. My PT says its the constant improper load on my L4/5-SI. I just had a new CT Myelogram and z all my lower disks are bulging and narrow and It’s mainly my right side that I experience the intense pain with sciatica and numbness down my leg. Would love to know exactly what kind of adjustments your chiropractor does with your fusion in mind and any tips to what has worked/how often you go. Thanks, so nice to know others stories! Take Care!

  103. Rick Gibson says:

    Thanks Amanda. I will take your advice. I’m willing to try most anything to keep the pain away.

  104. Jennifer Gayraud says:

    HI to all,
    I have pretty much the same story… diagnosed with severe scoliosis at age 10, wore a brace for a year, and then was told that didn’t work, parents freaked out, hospitalised for two weeks because of pain and inability to walk or breath, 68 degree curve, surgery in 1987 at age 12. It’ll be 31 years this February. I have been progressively worse over the past 20 years, each pregnancy things got worse. I have progressive curvature above and below my harrington rods, sacroilitis, chronic nerve damage in both siatic nerves, pain in my neck, hips, radiation from lower back and hips into my toes, and I now have problems with my shoulders and severe pain in my left shoulder and elbow…can’t lift a plate. I am sure I’m skipping many things. Bottom line, I moved 5 years ago with my husband to France because the american system gave me no help! Here I have therapy 2-4 times a week, and have full medical coverage for anyting related to my back problems. My doctors think I might have anklyosing spondylitis, but have trouble diagnosing because I’m HLA-B27 negative. I will be hospitalised mid February (oddly on the anniversary of my surgery) to have more testing done. Everyone’s posts have been very helpful and eye opening. I am definately going to have them look at my urine for elevated metal levels.
    I’ve also been completely unable to work for the past 7 years! I am fighting to get disability here in France where they’ve at least recognised that I’m between 50-75% handicap and gave me a parking permit, I was denied SSDI at home. My Rheumy at home just pust me on flexeril and pain meds and called it fibromyalgia . Has anyone else been diagnosed with Anklyosing Spondylitis????

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