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    • #14490
      Matt Lafleur
      Keymaster

      Many FAers have to get spinal realignment surgery. My sister had it; I didn’t.  The doctors said that though my spine is curved, the curvature wasn’t at the level that required surgery.

      Does that change over time?  Do adults with Friedreich’s ataxia have that surgery, or is it only for children? Have you had that surgery?

    • #14506
      Clester
      Participant

      I mentioned something similar on a previous post. Through my wife I have met several FAers and I’ve noticed that the ones (as they have gotten older) that had their spine fused have gotten along much better than those who didn’t. Obviously that won’t be the case all the time. Just my observation.
      I’ve noticed the ones (over 40)that had their spine fused seem to be able to sit up straight and keep their head up much easier. The ones who didn’t all have trouble keeping their head up straight(including one that is only 28).
      Thanks to the doctor several years ago that tried to kill my wife, she can’t feed herself now and the fact that she can’t keep her head up straight makes it very challenging to feed her (I’ve gotten used to it, but anyone else that tries she ends up wearing half her food). It also makes it almost a necessity to have side supports on their chairs/scooters where the ones with spinal fusing don’t need it. In my wife’s case anyways it gets very uncomfortable for her at times.

    • #14516
      Clester
      Participant

      Adding to that. My wife can’t tilt her head back anymore so she has to drink with a straw always and has neck pain almost always.

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