Daughter has congenital kyposis and scoliosis — Scope | Disability forum
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Daughter has congenital kyposis and scoliosis

bickbock Member Posts: 1 Listener
Hi I am a parent  who has jus found out my daughter has congenital kyposis and scoliosis. We re still at investigation stage but will eventually have to have a operation to fuse her spine  She 14 years old and also has autism which makes medical assessments very stressful x


  • salwil89
    salwil89 Member Posts: 56 Courageous
    Good luck. I have scoliosis. I wish the scoliosis op had been discovered in a year when I would then have been young enough to have it. Without it, my curvature has worsened over the years due to degeneration of the spine. So even though medical assessments are stressful for your daughter, it is well worth going through them to receive the end result.
  • Alex
    Alex Scope Posts: 1,305 Pioneering
    Hi @bickbock,

    Welcome to the community.

    We've got a collection of tips from community members about medical appointments:

    I imagine a lot of them won't apply to your situation - but there might be something useful in there! If you have any of your own we'd love to hear them!
  • Robs
    Robs Member Posts: 49 Courageous
    I have had surgery for Kyphosis and Scoliosis (Scheuermanns Decease) l had my thoracic spine fused and four titanium rods screwed to my spine. The only advice l can offer is don't have the surgery until it becomes absolutely essential. The surgery is long 18.5 hours, N my case and the recovery long. Then there's all the physiotherapy, l spent a further year in rehabilitation hospital.

    I wish you and your daughter the best of luck, it's a long and dusty road. I just wish l could have offered you a little more positive advice, but it's best to know exactly how it is.
  • delise1
    delise1 Member Posts: 55 Connected
    Hello I had my surgery for scoliosis in 2006 spinal fusion which a rode  was placed in my spine  and now the pain is back everyday I'm in pain my back is literally killing me for this operation only work for a while but the pain will come back I can promise you that I don't think it's right having the operation my pain is so bad but good luck to you and your daughter
  • Robs
    Robs Member Posts: 49 Courageous

    Xrays of  my spine (before and after) now I am unable to walk and have constant pain. For me it was surgery or death. I wish hadn't had it done.


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