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How do you manage scoliosis?
Having a curvature in the spine, known as scoliosis, is one of the many symptoms of Friedreich’s Ataxia.
For those of you with scoliosis, has a brace helped? Is it to the point that you discussed or had spinal fusion surgery?
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10 Replies
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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.
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What types of massages does he get? Do they help him?
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Usually an hour full body massage. It does seem to help when he’s stiff and having back pain.
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I had scoliosis surgery 10 years before my FA diagnosis. No problems
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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.
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That’s awesome that your daughter still goes horseback riding!
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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)
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I hope your experience is the exceptional to the rule as well!
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It is so interesting to hear how FA affects everyone differently! Thank you all for sharing your experiences.
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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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