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Flat Back- Harrington Rods

Started by 100000443359163... on 09/24/2014 1:49pm

Hi, I have been disabled since 92 and have tried every thing that has been suggested and have been to well over 15 different doctors. I had surgery for a ruptured disc and have been told that my disc in the lower part are all deteriorating. My fusion was in 75 at the age of 16 with a curve 62/32 with internal rotation and rib collapse. I was given 2 choices. #1-have the fusion and was told the possible problems or #2- stop wearing the Milwaukee brace, which wasn't working anyways, my spine would continue to rotate causing the lung to first get squeezed and them would fail and my heart would suffer. My ribs would collapse over my hip and I would be totally deformed. So, I had 2 weeks to clear up my pimples and had it on Halloween. I bleed out 3 times and spent a lot of time in ICU. I ended up with an infection in the lower incision and was flat in bed 3 months. Went home with an over 25lb body cast weighing less then 90lbs at 6ft. I recovered well, became a nurse and had 2 boys who also had fusions that where totally different in every way.
So here I sit and 2 days ago I stumble on the Flat Back and it stated everything I lived through. I tore my meniscus in my good leg, the other has severe sciatica and had favored it. I went to the doctors and told her what I had found. She stated that to have this surgical procedure would most likely end up in a totally poor outcome considering things I didn't think of. When I was fused they took a graft from the hip and mixed it with cadaver bone,which they still do, and packed it in between the vertebral body thus making my spine one large bone. The remaining spinal bones lose their original size and the disc themselves, well I have no idea what happens to them. So, in this new surgery it states they undo part of the rods possibly removing them and the they reshape th way the spine is. I just think the possibilities of breaking the actual vertebral bones would be high due to the fact that they have been fused and now normal bones have grown together so it's one piece What if they get in there and it falls apart. I would be in a lot worse shape and it would be likely they would have to fuse all of the remaining vertebrate. I could lose my ability to walk and although I have been told that I could lose bowel and bladder control i time, I may lose it then. Thinking hard about this I have come to the conclusion that this would be too dangerous for me to even consider it.
So I will stay on Lyrica and Methdone and hope it holds the pain. My doctor will not increase the Methadone because she doesn't feel comfortable and I would have to go to a pain Doctor. I have had the following done, epidurals, caudal blocks, facet joint injections, ablations, Ricci, manipulation, PT, water exercises, and I can't even remember everything. When I moved here I went to a specialist in Harrington Rods to find out if he had anything I could try. He looked at all of my paperwork, mri's and Cats and said he was sorry, that I had done everything he could or would suggest. I think I am like every other person who is in pain and see their body start to deform, that we go from one doctor to the next hoping and praying that this doctor will be the ONE! That he will have that magical treatment that will make me a productive person. That people will stop staring at me or feeling pity for me. I just want to stop being jealous when I see someone walk or run, someone whose body hasn't betrayed them. I will not stop trying to find anything that will help. I refuse to be sad. There are so many tiny ones who suffer and are so young that they don't understand why they have pain. I have been able to see my sons grow into happy healthy adults and I will continue to bug them about protecting their backs. I pray their future holds only great things and they will never have to go through this hell. Oh, I forgot, I use to sleep sitting up or in the recliner which shorted my leg ligaments so be careful about doing this. My parents bought me a sleep number bed and for the first tome in years I can sleep laying down and get 5 full hours of sleep. If you can, try to find a bed that will help you rest. It helps to tolerate the pain. I have also found meditation is so helpful!

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4 Responses


Kathy, I also had scoliosis surgery for the double backward s curve in the early 70's at age 13. I was fortunate to not have any complications from it until decades later. Who knew back then the problems the Harrington rod would cause due to not allowing for the natural curve in our back. I have not had insurance for 10 years and am trying to get help, or see what my options are now. I applied for SSDI last year. I haven't worked since early 2011 because of this. I have been denied and am waiting for my court date. I feel like my body is falling apart. Pain in neck,shoulders,lower back, left hip and also like you, left knee problems. I have this abnormal swelling to my left lower back that has stayed for years now. Also, I bend forward and it gets worse as the day goes on. The chronic fatigue is a killer too. Believe me , I understand a lot of what you are going through. Never thought at 55 my life would turn out this way. Take care of yourself the best you can. Blessings to you.


I'm sorry you are also going through this painful life. I'm positive that when they did this type of surgery they had not a clue that we would end this way. Get this, I have asked every doctor that I have gone to if there is any study on Harrington Rods and what has happened to all of us as we age. I have requested one to be done. I am somewhat functional and do have some quality of life because I demand it. I make sure to laugh every day because I believe that we have to keep our spirits up because this is as much a killer as any disease. I don't think it gets enough attention as it should. We are falling apart and I don't think the doctors know how to handle us because we have something that many of them know nothing about. It stated in a paper I read that they stopped using Harrington's in the early 80's which mean many
doctors have never seen or participated in this surgery so they are at a loss. I think that's why they want to do epidurals and blocks. They don't know where to turn and they are guessing. So, where do we go and what do we do? I wish I could go back to my surgeon but I believe he is no longer in practice however his son now does scoliosis care. I have even asked Shriner's about it and they kind of shook their heads. I am grateful that my sons have a totally different fusions and pray that they never have these problems. The one thing we all have is that we all have pain between our shoulders sometimes. I was watching Dancing with the Stars in the last show the contestant with prosthetic feet had this pain after a move hurt her and it was determined that a rib had slipped out and she had to rest it so it would slide back in. No one has been able to tell me what this pain is and I thought that it might be the same. I would be interested if anyone else with fusions around the T-4 have this pan.
Thank you for writing back. Maybe if we start gaining information on each other we may be able to help each other. Maybe we can figure out at least a little. Even a little pain relief would be worth it. I am terrified when I think of the future so I try to only concentrate on now. At 55 I feel like my health is starting to decline and fast. I'm trying to stop this fall. If I could just halt it now maybe I can get to work on walking and stretching out these tight muscles. My back is so tight it feels like a rock.
Please keep connected and we can support each other. I will pray for you!


Oh, I wanted to also tell you to go to legal aid and get a lawyer to fight for you. I was also denied for a year and as soon as I got a lawyer I was approved. It makes me so mad when I see people on disability who are clearly able to work. A new neighbor that just moved in is on disability for a bad back. She was putting together a futon frame and then she carried a large duffel bag down to her car. I never even saw a slight stiffness and it looked like it caused her no problem at all. Here people like us have to fight for what we put in for with working and others just slide into the system. I get $16.00 in food stamps and my car is a 94. I have no savings and live check to check. My other neighbor is clearly disabled and owns property, has a new car and savings. She gets $150.00. I don't get it. I have medical bills that will take me years to pay off and I know more are coming. I almost thought about standing on a corner with a sign because I heard they do pretty well downtown. I just don't know how to work the system!


Thank you for your reply. I believe some people are just more honest than others and people like us that try to do the honest and right thing get the bad end of the deal. I wonder if the food stamp office(DHHR) knows about your neighbors savings? I appreciate your prayers, same for you. I have been doing some research on our past surgery too. I saw one article that stated over half of the people that had this surgery have developed flatback, DDD and other complications. I have been reading other sites such as yahoo groups flatback revised and fiesty scolio flatbackers. Also,scoliosis dot org and the national scoliosis foundation forum. Showed me there are many others that are going through this too. Some that have done the revision are satisfied with the results, others not so much. And there is no study that shows how well these people will do as time goes on. I hired a lawyer after I was denied after first applying. Wish me luck on being approved. I even thought I might get better, so I waited on applying. Once again I wanted to justify to myself that I deserved it or I just couldn't accept that my life would never be what it once was because of the pain and fatigue. It does help to talk to others that know what you are going through. Yes, I will keep in touch. After all, we are the same age and I believe our professional life was the same too.