Friedreich’s Ataxia News Forums Forums Living With FA How do you manage scoliosis?

  • katie-griffith

    Member
    October 5, 2022 at 9:26 pm

    My son has scoliosis but never used a brace or had spinal surgery. He does have back pain from time to time and massages seem to give him some relief.

    • christina-cordaro

      Member
      October 6, 2022 at 6:17 am

      What types of massages does he get? Do they help him?

      • katie-griffith

        Member
        October 6, 2022 at 10:13 pm

        Usually an hour full body massage. It does seem to help when he’s stiff and having back pain.

  • Tina-D

    Member
    October 6, 2022 at 4:43 pm

    I had scoliosis surgery 10 years before my FA diagnosis. No problems

  • patricia

    Member
    November 2, 2022 at 2:13 am

    My daughter had  scoliosis surgery at 11 years old: VBT ( vertébral body tethering). She can move easily ( it is not a vertébral fusion) and still go horse riding.

    • christina-cordaro

      Member
      November 8, 2022 at 12:09 pm

      That’s awesome that your daughter still goes horseback riding!

  • becky-cook

    Member
    November 5, 2022 at 11:46 am

    before I found out about the FA, I had surgery for my scoliosis (Afterwards had to wear a neofract jacket (Made from plaster of Paris) for about six months afterwards ,) when I was 13 I am now 45 when I was about 17 (I was quite vain) I had six ribs removed so my back looked straight, it was amazing and although I do not get pain often I find sleeping without a pillow kind of  resets it.  over the last five or so years has started curving below and above the rod so I kind of look a little crooked  I read that the Rod has a shelf life of 36 years It’s still not painful so I’m hoping mine is the exception to the rule, although if I sit on a hard chair I can feel it sometimes(It’s very weird)

    • christina-cordaro

      Member
      November 8, 2022 at 12:12 pm

      I hope your experience is the exceptional to the rule as well!

  • katie-griffith

    Member
    November 7, 2022 at 1:13 pm

    It is so interesting to hear how FA affects everyone differently! Thank you all for sharing your experiences.

  • jarrod-guth

    Member
    November 8, 2022 at 3:41 pm

    My son (14) just had spinal fusion surgery in June of this year. He has had some issues after the surgery such as sitting for too long can cause his back to be sore. We’ve been doing half days for school right now. He does seem to sit up much more, but he’s not able to bend over which has made toileting tough.

    I installed a bidet for him which helps at home, but at school it’s been an issue. I’d love to hear advice on this if there is any.

    I wasn’t told and I didn’t know about VBT. I know it’s fairly new, but I wish I had known about it. I don’t know if that would have been the better way to go or not.

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