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

Abstract

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

Abstract

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?

85 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.

  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.

  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?

    • 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 to..ie housework..my daughter and granddaughters give me a hand..cleaning 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 moments..so 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….

  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.

      Lorraine.

      • 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.

  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.

  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: http://www.egoscue.com/santamonica_staff.php. 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 http://www.naturehaditfirst.com/ 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.

    • 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.

  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 Jakaren224@aol.com. 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. Jakaren224@aol.com

      • 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.

  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.

  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.

  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 (curvygirls.com). 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

  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 sdcoffield@aol.com 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. kmbori@yahoo.com. Thanks for letting me vent/share.
    Kim

    • 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………..so 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. sdcoffield@aol.com

  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. http://www.medscape.com/viewarticle/777628_1

    • 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.

  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!

  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.

  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.
    And
    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…
    again…”unfortunately”
    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

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