An Orthopedic Surgeon’s Take on Removing My Harrington Rod

Top of Harrington rod and spine

Top of Harrington rod, wires and spine (staples were removed post-op)

Last week my husband and I saw a Dr. Christopher Mann. He’s an orthopedic surgeon. I wanted to know what chances there are of my rod removal. Would bone need to be broken? Is something like this even done? Dr. Mann isn’t a scoliosis surgeon, but he knew more than I about bone, and I wanted to hear his take.

He thought that the wires connecting the rod to the spine were made of stainless steel, just like the rod. I was surprised to see that these 16 gauge luque wires were simply twisted closed, like twisty-ties around food bags. Getting the rod out wouldn’t be the problem, he said. That could probably be screwed out out from the top and bottom screws and lifted out. But since the wires are hooked into and looped around the lamina, they are right next to the spinal cord and the nerves. If you even slightly tapped the cord, you risk paralysis. Additionally, bone might have grown around the wires, since this Harrington rod surgery was done 28 years ago. Dr. Mann strongly advised NOT to remove the rod.

Lamina

Lamina – Photo Credit Cedars-Sinai.edu

On the plus side, he thought that this type of surgery was a very effective way to treat scoliosis, even back then. And as to my concerns about metal ions floating around my body and doing god knows what, he said that it was nothing like metal on metal hip replacements. In those, the articulation of bone and socket cause an ‘explosion’ of metal ions, which is why they’re no longer done.  He said my stainless steel rod was inert, but also said he couldn’t say zero corrosion.

He also named another reason to not have surgery – there would be a (another) large incision, and there’s always the risk of infection.

Something else I’m glad to know about is that even if they could take the rod and wires and screws out, and all went well with surgery and I was sewn back up…could I then bend my spine? Answer: nope. Back in ’84 they really did have to fuse the whole thing (from T3-L4) or else the spinal movement would have broken the rod. So, fantasy images I have of myself doing yoga with a flexible spine – dashed.

Since Mann isn’t a scoliosis surgeon, I don’t consider this the final no. If I wanted to pursue it, I’d drive two hours to someone who does rod removal for their opinion.

But for now, rod removal is on the (back) back-burner.

 

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40 Responses to An Orthopedic Surgeon’s Take on Removing My Harrington Rod

  1. Ali says:

    I stumbled across your blog today while doing research on rod removal. Have you seemed another opinion? I’m not sure if you’re having issues and that’s why you are looking into it or what the scenario is. I’m scheduled to have my Harrington rods removed on oct 1. I have rods from t4-l4, and have a bacteria infection in the hardware. Evidently it’s been forming over the last 15 years, but has now gotten to the point where it’s resistant to antibiotics. I have other problems that my spinal surgeon isn’t able to tell me if it’s related or not- numbness in my foot, shooting nerve pain down the leg, etc.
    I had asked about rod removal (different dr) about 6 years ago because I had a feeling the metal was causing the cysts on my scar and my headaches, at that time I was told it wasn’t a good idea. I now have a new dr who says his patients have seen good results from it but it’s still risky.

    • Amanda says:

      Hi Ali. How do you know it’s a bacterial infection in the hardware? What tests have you done?. Sounds like you have cysts on your back scar, which gives a clue that it could
      be a local problem. My stuff (symptoms) is all non-local to the spine, except for my current low back and hip muscle pain. I only got one doctor’s advice because there are two other things I’m going to try to help myself before I revisit rod removal – infected teeth that will be pulled soon, and then mercury chelation with Chris Shade’s protocol, not Andy Cutler’s.

      I feel for you and would love to keep in touch about how all this works out for you. What are your symptoms? How did you trace it to your spine? I would think that the shooting pains could definitely be related. Would love to know more about your situation.

    • Wendy Joannou says:

      Hello,
      I just found this site. I have been reading about Harrington rods. My son had scoliosis and when he was 17 in 2007 he had the rods placed, he was cut from back of neck to waist. A few months after surgery he developed swelling in one spot on his back and then he got severe pain, the pain was so bad he wanted to die. I took him back to the sirgeon who could not figure out what the problem was, so he sent us to Texas childrens hospital in Houston, they reviewed his scans and could not see a problem. The swelling would eventually go down and the pain would disappear only to reappear along with same swelling 5-6 times a year and last for 2-4 weeks at a time. My son was in so much pain he wanted to commit suicide. In October 2011 he developed the swelling and pain but the swelling kept swelling, it turned into an abcess that had to be drained and pact, he was hospitalized for 3 weeks on antibiotics. The fever never left and they could not get infection under control, sadly my son had no insurance at this time so he was released from hospital and told his rods were infected and that he needed a surgeon to open him up, but with no insurance no one would help him. We knocked on so many doors and were turned away for lack of insurance. My son is 6 foot tall and now weighs 109 pounds, he has pustules all over his body and has had that open wound from the abcess for 15 months now that constantly drains, he has fever and sweats daily. My son is dying and no one will help. He finally recieved insurance on January 12, 2013..yes he has been working while he has been dying so that he could get this insurance…..i called the surgeon who originally placed the rods and pled his case and he finally has an appointment on Tuesday…I pray that my son will survive this…but i am terrified that this infection has done to much damage now …after reading posts on forums and can only conclude that bacteria has been growing since that first episode months after the rods were placed 7 years ago. Will give an update when we have one. Wendy

      • Amanda says:

        Wendy, I am so sorry to hear about all of this! It is unbelievable that the original surgeon wouldn’t help right away, insurance or no insurance. It really does sound like infected rods – I know that this does happen. In the meantime why don’t you try applying a good colloidal silver, like Sovereign Silver, topically along the back where you think the infection is inside? And have him take it internally too. With all those antibiotics he took, make sure he’s on probiotics also. Call this guy to talk about how silver could help your son (website looks a bit cheesy but I know from reliable sources that this is an excellent product). Please keep us posted about how the rod removal goes! See if you can keep the rods once they’re out (I would check on legal issues beforehand, but I believe it’d be your right to keep them) in case you need them for insurance issues down the road. I am sure he will be okay!!

        • Wendy Joannou says:

          Thanks for the reply…Yes we have used colloidial silver, he sprays on the wound and has been taking orally as well for the past 5 months. We have searched into all kinds of herbal/health things we could do on our own. He feels it has not helped, but who knows for sure. And he is trying to build himself up nutritianally before surgery. I am of the opinion as you that the rods will probably have to be removed but James says he wont let them take them out, he thinks if they go in and clean it out and put in a shunt to deliver antibiotics this will be sufficient. But i really believe they will have to be removed from what my research has told me. He is being stubborn because he is scared. Thanks for the heads up on keeping the rods should they be removed..i would not have thought about this!!

      • Will says:

        Sounds terrible. It looks like there is hope in sight. If for some reason it does not work out with this doctor, I would try INOVA Fairfax Hospital in Fairfax, VA.

  2. Dana says:

    I am so glad you both have posted here about your rods. I am 42 and have had my Herrington rod since I was 13. I hadn’t had a lot of trouble until the past couple of years. I have an appointment on August 23rd at the Baylor Scoliosis Center in Ft Worth. My pain is sometimes so bad I cry myself to sleep. My right side is numb sometimes down to my fingers and feet, hip hurts, back hurts. I am healthy, eat healthy, like to exercise. I can’t stand the thought of being 80 and what pain I face if something isn’t done. I talked with Baylor today over the phone and they said they see a lot of H. rod patients so I am hopeful they can help me. I would like to have the rod out…but will see what they say. Ali, can I ask where you are getting the rod taken out? I would love to keep in touch with you both. I have been searching for anyone who understands what I am going through!

    • Amanda says:

      Hi Dana,

      So sorry to hear about your pain. Pain sucks. But know that it can go away, just as easily as it came. Hopefully you will like the Baylor doctor, and he/she has done lots of removals with good success. I am not taking my rod out now, as the pain/stiffness I have I do not believe is related to it. But I am glad that we connected so that we can go through the process together. You will be okay!

    • TONYA says:

      DID YOU HAVE THE SURGERY? PLEASE CONTACT ME. I AM A PATIENT AT BAYLOR COLLEGE OF MEDICINE IN HOUSTON, TX AND I HAD A HERRINGTON ROD PUT IN 1982. I HAVE FLAT BACK AND I HAVE LOTS OF PAIN, CANNOT WALK STRAIGHT, CANNOT WALK OR STAND LONG ETC, AS YOU READ ABOUT OTHERS AS WELL. I NEED MORE INFO. I AND MY HUSBAND ARE WORRIED. PLEASE CONTACT ME. THANK YOU

      • Amanda says:

        Hi Tonya, I had the surgery in 1984. Which vertebrae are fused? Mine is T3-L4. I am sorry about your pain. Are you seeing a doctor that you like I hope?

  3. Ali says:

    Dana-
    Sorry I didn’t get back to you sooner, I had sent this to Amanda. I hope you got some answers from Baylor.
    Hi Amanda-
    I had my rod removal on October 1 in Eugene, Oregon. My original surgery was in 1997 when I was 18. I have 4 rods from t4-l5. About 6 years ago I went to my general physician because she thought I had cysts on my scar. I had a big swollen spot right in the middle of my scar. During that time I also thought I had migraines but no medicine helped. So once a year I’d go get this “cyst” drained and deal with these migraines that felt like spinal headaches once every few months. Last December I woke up one morning and couldn’t feel my left leg, we went to the ER and the conclusion was it was my back. I went to a new neurosurgeon who had a reputation as being innovative and not “knife happy”. After MRI and X-rays were taken he diagnosed me with spinal spondylosis at l5-s1. He was hesitant to do surgery since it’d mean rods from spine into my pelvis. So I did 2 cortisone injections and physical therapy along with prolotherapy. At this point I have 98% of feeling back in my leg and foot. Last June I developed a huge boil (or looked like one) on my scar. I also had a fever, and of course it was the weekend. I was paranoid about infection so I went to our local urgent care. The nurse practitioner told me I needed to see my back doctor not my general physician. That Monday my back dr was able to squeeze me in, he put a tube in the growth (ouch!!) and discovered it went into my rods. He diagnosed me with having a bacteria infection in my hardware. He explained that most likely I’ve had a small amount of bacteria that’s been growing over the last 15 years. He asked if I ever got spiking fevers accompanied by a headache and back pain. Sure enough this was the cause of my migraines. He was hesitant to do immediate surgery because he knew he’d have to cut the majority of my back and recovery would be longer (I have 2 kids and work a demanding job). He put me on antibiotics to kill the infection for now. I had temporary release but by August I was getting spiking fevers and headaches on a weekly basis. My scar would get hot, inflamed, and red. So that brings me to my surgery that I had Oct 1. I’m still recovering so its hard for me to give a good post op report. I’m having muscle spasms, but I was expecting those. I’ve also had allergic reactions to two of the antibiotics so I’m working through being covered in hives.

    So that’s my story. I’ve always been anemic so I’ve never had high iron levels. I always knew deep down that my rods were causing more problems, but it’s hard to have a dr understand that. I truly believe having foreign substance in your body is going to cause problems, eventually your body will reject it. It’s too early for me to tell if having another surgery was worth it. I haven’t had a fever or headache so that’s a definite plus! There’s really no way for a doc to see if you have bacteria growing on your hardware because it doesn’t show up on pics. In my case the bacteria had grown through both of the right side rods.

    • Amanda says:

      Wow Ali what a story. You must be so relieved to have those rods out (did they all come out or just the infected ones?) If I understand correctly, you had the rods in for about 9 years before you started noticing problems – the cysts on the scar. In a way it’s good that you had a localized reaction so that you could relate your problem to the hardware. Although it sounds like 6 years went by before you were able to take out the root of the problem.

      You have been through so much! With kids and a job! I do so hope you will start to feel better and better. Please keep us posted as to how you are doing. Did the surgeon say it was very tricky to take out the rods? Did he/she have to break bone that was fused to the rods or screws or hooks? That’s what is holding me back from getting removal surgery – the risk of paralysis. That and the fact that there’s a small hope that I can somehow chelate out the shed metals that are surely hanging out in my tissues, causing illness.

      What were your rods made up of? Mine is stainless steel, which the surgeon said was iron, nickel and chromium. My iron levels are abnormally high, and I’m testing my chromium this week. It would be great if you had kept the rods, or taken a picture of them so that we might be able to see the state of them (corrosion), but I think you had enough to deal with for the surgery!! One study I read says that all retrieved metal instrumentation show sign of corrosion. Which explains the metal toxicity for rod people.

      Please let us know how you are doing and thank you so much for sharing your story. I am sure you will get much better from here on out!

  4. purplerose says:

    I had a hardware removal surgery because I was in pain and I didn’t like having the metal in my back. The bone had grown over the metal, so it took many hours, but it can be done and was well worth it. People who had Harrington rods like me are now suffering all kinds of problems with pain and many have to have revision surgery. It was a terrible surgery and is now causing a lot of problems for some of us.

    • Amanda says:

      Thanks for your comment. It is really good to hear directly from someone who had a revision surgery in which bone had to be removed from the rod/hooks/screws. Sounds like you are doing fine now? I hope so. I do not like having the metal in me either. May I ask who did your surgery, and how was the recovery? Thanks again and I hope you’re doing great!

  5. Molly says:

    Oh how I feel for all of you. I had incapacitating pain seven years ago. I was diagnosised with flat back syndrome and was told that surgery was my onlyoption. Six years ago I had a revision surgery. I now have neurological deficits t with daily complications that I do not wish on anyone. I am still on a quest to repair my deficits. Please please please make sure that you have all the information prior to going into surgery. There are many many different things non-surgical interbventions I have learned about in my quest for answers. Surgeons do surgery investigate all options first.! Best wishes to feeling better!

    • Amanda says:

      I would love to know what kind of revision surgery you did six years ago. Did they take out or add metal hardware? Were there any improvements? What type of neurological deficits do you have? One non-surgical intervention I know of (and wish I knew about before my surgery at age 14) is Egoscue therapy. Here is a post I wrote about Egoscue in my Egoscue Experiment blog.

      Here is Egoscue therapist Matt Whitehead’s post on the subject.

      Even though you and I have fusions, there’s still a lot we can do. I always feel better after doing an Egoscue menu.

      Let us know how you’re doing.

  6. C says:

    Hi, Amanda,
    I just came across your site. I don’t know what is your health issue, but “infected teeth that will be pulled soon, and then mercury chelation with Chris Shade’s protocol, not Andy Cutler’s.Mercury chelation, ” and your scoliosis jump out from the monitor to me. I have them as well. I am pulling an infected root canal and plan to pull the other 2 even they are not infected, but I have learned what root canals can lead to.

    I’m just starting to learn about types of Merchruy/ heavy metal chelations. I’ve learned about Chris shade’s protocol, ordered Andy Cutler’s book which is on the way. I am reading Tom JcGuire’s book which I think is very similar to Chris Shade’s protocol. What’s the reason you choose to use Chris Shade’s vs Andy Cutler’s?

    Have you researched and thought there might be a link between Mercury toxcitiy and scoliosis? I’ve been thinking that as I’m reading more on how mercury effects DNA and cell @ cellular level.

    Does rebounder hurt and make your spine worse? I’d think the movement put too much pressure on spinal cords. I just got one, but I feel the pain within first few days. I’m wondering if whole body vibration that targets lymphatic drainage will be more suitable.

    Cheers.

    • Amanda says:

      Scoliosis, mercury, infected teeth, a rebounder – we have a lot in common! That is great you are getting your infected root canal out. As you know, some people believe that root canal treated teeth can be the source for degenerative diseases, like cancer and heart disease. The root doesn’t get 100% filled so bacteria get locked in the dead tooth, and then you have a source of infection..and all the toxins that continuously result from that. Okay enough Debbie Downer.

      As for mercury chelation, I did do Andy Culter’s protocol, after I consulted with him last 1.5 years ago by phone and mailed him my case history. I took dmsa and ala in small amounts – varied doses ranging from 3 mg to 25 mg – for about five or so months and seemed to get worse from mobilization and not enough mercury excretion. But there are definitely people who have made it work for them. If you do it, start at 3 mg with one of them and go super slow in your increases, because side effects can be delayed.

      When I did Chris Shade’s mercury speciation test, I discovered something that didn’t surprise me: my liver and kidneys are not the best detoxifiers. I will post these results soon so you can see.

      My spine doesn’t hurt, so bouncing on the rebounder is fine for me. You know you can do what they call the health bounce – just stand on it and go up and down without your feet even leaving the tramp…this exercises all of your cells and make them work better!

      And I have learned that there is a correlation between mercury toxicity and scoliosis…I am still learning about this subject.

      Let us know how you do with your chelation! I will post on mine as well, in the coming weeks.

  7. C says:

    I just got my standard blood work back, proved to have Hg in my blood. Conventional normal range is up to 11, mine is 5. Yet, my Dr. says it should be 0 cause we should not have any Hg in the body. My intergraded physican priscribed me DMSA 250mg , 2 x a day w/ meal. 5 of 250mg the morning before amalgam removal. He said DMSA is “amino acid” binds mercury in the gout. I’m really scared to take it. From what I have researched and read, DMSA will moblize mercury and cause toxic effect. I’ve been having serious mercury attacks for past few months, and each time took me 7-10 days to slowy, painfully recover back to normal. Finally found out Chrolla and been able to use it to keep the symptoms at bay so far. daily coffee enema and Other supplement help a lot as well. I immediately feel it if I miss the dosage or not taking enough dosage. I would think i’m quite sensitive, therefore, I am really hesitant to try DMSA, especailly i think it’s quite large dosage, is it? Mine is from Thorne researach, supplement form, not priscription one.

    any thoughts?

    • Amanda says:

      I would definitely not take the DMSA at those dosages and at that schedule. You’ve read about Andy Cutler’s work probably. If not, here is a great place to learn. Did you do a challenge test (stay away from those)? It sounds like you did just standard blood work. Do you have amalgams? How many? I would call Quicksilver Scientific’s office or email them and ask to be put in touch with one of the practitioners who has studied with Dr. Chris Shade. You can have phone appointments with the practitioner, which is what I do. His testing, as far as I know, is the best way to find out how much Hg you have – and which kinds – and how well your body is eliminating it. Shade talks a lot about the ‘gates being closed’ at the small intestine so that Hg and other toxins can’t get out. The kidneys are very sensitive and are often damaged and unable to excrete much mercury, which is what happened in my case. I take RenTone, kidney herbs, to help with this. Their recommended doctor will be able to suggest other supplements besides chlorella (glad that works for you) to help with the excretion. Here’s a pdf you can download to get a better idea of Shade’s work.

      Please let us know how you do! You can get better!!

  8. check out: http://www.sonoranspine.com/
    great group of spine surgeons that specialize in scoliosis and other major spine deformities especially Dr. Chang & Dr. Crandall. A lot of great info in the website

  9. Eva says:

    For anyone considering scoliosis or scoliosis revision surgery, I would strongly suggest visiting this website, which contains a huge amount of information about the best surgeons and considerations for the surgery: http://health.groups.yahoo.com/group/Flatback_Revised/
    If you do decide to go through with the surgery, make very, very sure that you get the best doctor in the U.S. to do it, someone that has done at least 100 of these surgeries, even if you have to travel, because that can make a huge difference in the outcome. I also learned (from my 1st 2 surgeries) that you’re sometimes much better off having a neurosurgeon very experienced in this area do the surgery than an orthopedic surgeon; the neurosurgeons are more highly trained and much more aware of nerves. My orthopedic surgeon managed to pinch a nerve between my shoulder blades during the 1st big surgery, and then didn’t know how to manage or diagnose or fix it, and didn’t send me to a pain center either – he prescribed Valium instead! Excruciating, caused many, many more muscle spasming problems that slowly grew over most of my body because of the terrible pain, and then he gave me Valium. Ridiculous beyond belief. And this doctor was the head of Orthopedic Surgery at Northwestern Memorial in Chicago, one of the best teaching hospitals around. It took many years for that nerve pain to slowly subside, and still gives me problems if I use muscles in that area much.
    Some of these spinal surgeons are outright butchers, some just very inexperienced, many not that smart, so be careful!!!

  10. marija terzic says:

    Does anyone know of a doctor who has the tools to take out the Harrington rods?

    My surgeon and I live in the Los Angles area and I will be taking the rods out except for the surgeon can not find the tools because the technology s old now?

    Any help is greatly appreciated.

    Thank YOU!
    Marija

  11. Wendy says:

    Hi Amanda, Just wanted to update on James. He was hospitalized on January 31, 2013 and ended up having 5 major surgeries. He had harrigton rods placed in 2007. And developed problems 8 weeks later. Drs now say he has been infected the whole 6 years. His body was riddled in infection from the rods. They were finally removed and he underwent 5 surgeries to clean out and cut away infection. He left the hospital on March 21, 2013 with a huge open wound in his spine. I learned how to care for this and the wound finally closed 2 weeks ago, July 2013. James has finally gone home to start his life anew. We have had a long journey that no one not even all the surgeons thought he would survive. Evidently the rods did there job because his spine seems stable without the rods, he fused completly and now he has no pain. He will be on antibiotics for a very long time..years they say.

    • Amanda says:

      Wow Wendy what a trial your family has have. I am so happy to hear that James is much better. He surely has a strong will to live. He knew that it will get better! Thanks so much for sharing the update with us.

  12. Linda Dunn says:

    Wow! After reading all the experiences of everyone, I have nothing to complain about. Blessing to all of you who continue to look for some relief. I had the herrington fusion in 1978 and I was told later that during that time there were only two types for herrington surgeries – good ones and bad ones. I am blessed to have had a good one. I have a very slight flat back at 50 yrs. old and only have pain in my lower back when I over do exercise. However, I do have migraines almost everyday of the week. I had them before my surgery, but now that I am older, they are so much worse and I was wondering if the rod could be causing them. I have been in inpatient treatment for them 3 times and was wondering if anyone had their rod removed and their migraines went away. Thank you all for sharing your experiences.

    Linda

  13. I HAD 2 HERRINGTON RODS 18″ LONG PUT IN MY BACK IN 1977 I WAS 24 AT THE TIME. THE PROCEDURE WAS DONE AT JOHN SEALY IN GALVESTON TX. I HAD NO INSURANCE . I NOW HAVE FALT BACK SYMDROME BECAUSE OF THEM I AM 61 NOW. IF I SIT LONG ITS HARD TO STRAIGHTEN UP BUT ONCE I GET GOING I MAKE IT OK. YES I WISH I COULD HAVE THEM REMOVED BUT THE DOCTOR TOLD ME YOU DON’ T WANT TO DO THAT. I TO WOULD LOVE TO BE FREE FROM THE RODS BUT I GUESS THAT’S ONLY WISHFUL THINKING UNTIL I MAKE IT TO HEAVEN AND GET MY NEW BODY LIKE EVERYBODY ELSE. I WOULDN’T WANT TO LIVE IN THIS BODY BEING PARALIZED AND SOMEONE CARING FOR ME. I WOULD RATHER CHECK OUT A LITTLE EARLY I SUPOSE. YOUR GONA GO ANY WAY SOONER OR LATER I COULDN’T BARE TO BE A BOURDEN ON MY FAMILY IT JUST WOULDD’T BE RIGHT FOR ME TO DO THAT. SO I JUST DECIDED TO LIVE MY LIFE OUT WITHTHE RODS IN MY BACK UNLESS GOD DECIDES TO REMOVE THEM BY MIRICLE HIM SELF. I KNOW HE CAN IF HE CHOSSES TO DO SO. I MADE MY MIND UP TO GET OFF PAIN MEDICINE NOW HYDROCODONE 10/325. I BEEN FREE FOR 3 WEEKS NOW IT WAS HELL AT FIRST BUT I DISTANCE MYSELF ONE DAY AT A TIME AND I’M MAKING IT. MY ADVICE TO ANY ONE GETTING FUSION RODS DON’T. CAUSE THE PAIN WILL NEVER GO AWAY AND THEN YOUR STUCK WITH THE RODS FOR LIFE OR TAKE A CHANCE ON BEING PARALZED IF YOU WANT THEM OUT. WEAR AN SUPPORT BRACE DON’T DO THE RODS IF AT ALL POSSIBLE IS MY ADVICE AFTER 37 YEARS WITH THEM IN MY BACK. BELIEVE ME I KNOW FIRST HAND WHAT I’M TALKING ABOUT.

  14. Wow, after reading this blog,I find I have been very blessed. About a month ago I had a massage and that was when my trouble started. My rod has been in for 38 years. I have not had trouble in the past with my back just limited on something’s but nothing big. I was 14 at the time of my surgery. It was done by a Dr. Johnson in Idaho. I knew 2 other girls who had had the surgery, 1 of them had to have it redone and the other was having to wear the brace after the body cast for some reason I don’t remember. But mine was just fine, no problems. I have an appointment on Monday and will find out what is going on.
    Is your blog still active? Would love to be able to keep updated with it.

    • Amanda says:

      Thanks for writing Laurie! Let us know what you find out more about what’s going on. I feel lucky too, as I don’t have pain and can do yoga, which I recommend for everyone. If there is interest, I will post some simple yoga poses that, done consistently, should make you feel good!

      • Terrie AUl says:

        Be careful on the yoga. I did a “teamwork” move with another much larger woman draping herself over my back and ended up with a ruptured disc! I also did cobra stupidly, like my rods would bend to accommodate that. I agree that stretching and staying limber help but think about the movements effects on the rods first.

  15. Dwayne says:

    I had my Harrington rod and fusion in 1979 when I was 16 y/o. Only once had to visit surgeon afterwards due to pain about 10 years ago. Very active and exercise frequently…no flat back or other problems. That being said, I came across this site while considering revision surgery, just to be rid of the metal.

    Now, I am not so sure…

    Considering pros and cons.

    • Amanda says:

      I do think about the metal still, but feel that there are ways to ameliorate that aspect. For example, diatomaceous earth can help escort aluminum out of the body. Revision surgery is pretty serious!

  16. Lucy says:

    I have just found your website and was really looking for information about why my rods keep breaking next to my spine. I am getting ready to have surgery number 18. My entire spine has been rebuilt and is textbook perfect now, but in the past, I had so many things go wrong and actually had some inferior work done which induced “Flatback Syndrome” even though I wasn’t born with Scoliosis. I am 61 years old and this has been going on for 20 years. In my research, I have found a wonderful, brilliant surgeon who is in NYC. I live in Albuquerque, New Mexico. This will be my 5th surgery done by him, but I am now able to stand up completely straight and walk with a cane. This is a tremendous improvement for me. My surgeon only takes cases that other doctors turn away. He is the only surgeon that will ever touch my spine again. I am encouraged as I know that I am in such good hands. Years ago, I developed Reflex Sympathetic Dystrophy in my right arm, have dealt with chronic pain and finally gave up trying to treat myself homeopathically, and am on narcotics now for pain. I have no quality of life without being on narcotics, but I feel like this is a personal decision and not everyone’s tolerance for pain is the same. If I can be of any help to anyone on this website, I would be happy to respond to any inquires. My surgeon said that he could fix my Flatback Syndrome and that I would no longer have to walk bent over looking at the ground. He said it would take 2 very big, and long surgeries.After my surgeries there I am sent to their re-hab floor for usually a couple of weeks to get good enough to be able to fly back home. I am so fortunate that I access to such incredible resources. He said that I will probably always need some repair work done and that has been the case. This next surgery will be to fix my broken long rod that runs parallel to my spine and I have had these break twice before. I know it won’t be my last trip to NYC for surgery, but I am confident that I am in the best hands possible for me. I feel blessed. I will respond to anyone who would like to have more information.
    My best to all of you,

    • Amanda says:

      Dear Lucy,

      I think your attitude is fantastic and very admirable. I am so happy that you found a surgeon who you like and who is really helping you. It is wonderful you can stand fully straight. I do think Egoscue would improve your body even more. Do let me know if I can help you get set up with a great therapist via Skype or phone. We are praying for a successful surgery in NY. Thank you for writing and keep us posted!

  17. deborah says:

    I am 49 years old and recently started having some breathing problems and put on oxygen. i was diagnosed with Restrictive Lung Disease from the scoliosis. everyone said nothing could be done and i would just live on the O2 for the rest of my life. I went to Mass General inBoston to see this Orthopaedic Surgeon for Spinal deformities and he gave me some hope the surgery could help me with my breathing, my scoliosis is back to 80 degrees curvature and putting pressure on my lungs from moving as they should. he suggested taking out the harrington rod and putting in the 2 rods that they use now days but he said that with all the fusion that I had, it would take a great deal to release that rod, i think the term was (Crankshaft Phenomenon), and might be too risky of a procedure, Has anyone else out there ever heard of this?

  18. Rhonda says:

    I live in Canada. Had my rods inserted in 76… i was 13. My rods go from t2 to l4. I also have a curve in my neck, bringing the number to three curves. I saw a surgeon a few yrs ago…..he was one of only4 surgeons in all of canada who could operate on me. To remove the rod, he said they would chisle it off, break my back in two places re shape it and build a cage arond it…then they want to fuse my neck…no thank you…i will put up with it and the pain. I now have arthritis in my remaining vertebrae and neck.

    • Amanda says:

      Hi Rhonda, Don’t give up! That rod removal does not sound very appealing. There are options to deal with the discomfort. Please read my post on Scar Release Therapy and Original Strength exercise. It is really helping me, and it is so simple to do! I will post more in the near future about my successes with it. Egoscue Therapy and OS should help you a lot with improving body alignment and decreasing compensation. I now do a jaw and neck exercise routine every night before bed and it is helping with my poor bite. This could help your neck as well. Let me know if you have any questions and good luck!

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