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  1. #1
    Join Date
    Apr 2004
    Posts
    2

    Unhappy need advice

    Hi I'm Sam. I'm 30 years old and have suffered with scoliosis since i was seven. I've had two lots of Harrington rods put in, the first when i was ten, that one broke. The second when I was thirteen (two rods in, one at front and one at back of spine). One of those came undone from my spine and had to be removed and at the same time they removed part of the second one.
    Since then I've been not too bad with back problems until I had my children since the birth of my second child a year ago my back has gradually got worse. The last six moths infact it has rapidly declined. After many x-rays, physio, acupunture and mri scan the specialists have now said that they can do no more as I have sections at the top and bottom of my spine which are worn away. They say all they can do is to help to sort the pain out and make it more bearable but I can't believe/accept that nothing more can be done.
    Has anyone else had these sort of problems and if so what has been done.
    Sam

  2. #2
    Join Date
    Sep 2003
    Location
    Fernley, Nevada
    Posts
    352
    Sam,
    I don't know what kind of doctor you are seeing, but you might want to see an orthopedist that specilializes in adult scoli. They are a little difficult to find, but they are out there. It would be worth your effort and he/she could offer you alternatives other than patting you on the head and giving you pain meds, which is what your doc is doing.
    Good Luck
    SandyC
    SandyC

  3. #3
    Join Date
    Apr 2004
    Posts
    2
    Thanks Sandy
    Thanks for the advice. I'll certainly give it a go.
    I just can't sit back and take it without trying every avenue first.
    I've spent hours trawling web sites about scoli. and any other back problems looking for a glimmer of hope.
    Do you also suffer from scoli. If so how has it affected you?
    Thanks again. Sam

  4. #4
    Join Date
    Sep 2003
    Location
    Fernley, Nevada
    Posts
    352
    Sam,
    Yes, I have scoli. I was dx at 13 with an S curve, curvature unknown. My folks were told that I had stopped growing so that there was no need to brace etc. They were told my back was stable. When I hit my 20's I started having problems, saw an ortho and found out that my spine was unstable and was moving. I had a Harrington Rod put in when I was in my early 30's. At the time of surgery my curve was 66L/70T. That was in 1983, in 1986 the Rod broke and was removed with more fusion added. By 1990 I was having problems, i.e. back pain/leg pain. I also felt that the shape of my body had changed. I was told that there was nothing wrong with me. That my back was fused and wasn't going to move. Between 1990 to 2000 I saw mulitiple docs who told me there was nothing wrong with me/dx with a neuro muscle diease/had to much time on my hands/didn't know what was wrong etc. I finally dx myself after much time on the computer and seeking information about scoli. I found out that I had Flatback Syndrome, due to the Harringtion Rod. I found a doc who knew about Flatback and adult scoli. I was seen at UC San Franscico. Had surgery in 2002. My back is much better. I no longer need heavy duty narcotics. I only take Neurontin for some nerve pain. But what pain I do have is not even near what I had before. Life has gotten a lot better.
    SandyC
    SandyC

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