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Thread: daughter will need brace-- thoughts on best options? Experience w Wilmington Brace?

  1. #1
    Join Date
    May 2017
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    daughter will need brace-- thoughts on best options? Experience w Wilmington Brace?

    My daughter, 12 1/2, was just diagnosed with scoliosis. Her T6-T11 curve is 33 deg to the right, and T12-L3 curve is 20 deg to the left. We have not yet met with the specialist, but from the pediatrician feedback and all of our reading it seems all but certain that she will need a brace.

    We live close to AI DuPont Nemours in Wilmington DE, but could travel to Philadelphia (CHOP, Shriners) or Baltimore (Hopkins).

    The reading online about different bracing options is a bit overwhelming: Boston, Providence, Wilmington, RSC, etc... From the previous threads, I've seen some positive feedback on the RSC Brace System (Rigo-System Cheneau). For the Wilmington Brace, which was developed at Nemours, I've not found much. I'm a bit worried about my lack of information on that brace, since Nemours may be inclined to prescribe that one?

    I'd appreciate anyone's thoughts/experiences with different braces, including your thoughts on their relative levels of discomfort. I realize that there are no easy options, but I figure the more anecdotal information that I have ahead of the specialist visit, the better.

    thanks

  2. #2
    Join Date
    Jan 2008
    Location
    NC
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    8,901
    Welcome. I am sorry to hear about your daughter's scoliosis.

    Please ask if she is a candidate for vertebral body tethering. While some studies support the efficacy of brace wear, is very hard, will not reduce the curve, and will not prevent progression to surgical range in the future for some patients. That is, it is no guarantee of avoiding surgery later on even if the patient remains sub-surgical at the end of the brace wear.

    http://pediatricspinefoundation.org/physicians/

    When you search tethering, the first site that comes up is a chiropractic site trying to make some money selling expensive and unnecessary exercises to make the spine more flexible if that is needed to be a candidate for tethering. Ignore chiro sites... they are not trained to deal with scoliosis. Any PT will work if any type of exercise will work.

    Good luck.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  3. #3
    Join Date
    May 2017
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    2
    Thanks Sharon,

    This is good to know about. Did your girls have this procedure?

    Joe



    Quote Originally Posted by Pooka1 View Post
    Welcome. I am sorry to hear about your daughter's scoliosis.

    Please ask if she is a candidate for vertebral body tethering. While some studies support the efficacy of brace wear, is very hard, will not reduce the curve, and will not prevent progression to surgical range in the future for some patients. That is, it is no guarantee of avoiding surgery later on even if the patient remains sub-surgical at the end of the brace wear.

    http://pediatricspinefoundation.org/physicians/

    When you search tethering, the first site that comes up is a chiropractic site trying to make some money selling expensive and unnecessary exercises to make the spine more flexible if that is needed to be a candidate for tethering. Ignore chiro sites... they are not trained to deal with scoliosis. Any PT will work if any type of exercise will work.

    Good luck.

  4. #4
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,901
    No they presented too early and were fused in 2008 and 2009.

    But it was only their thorax. One was told she likely will never need more surgery. For the other, I will be insisting on tethering if her lumbar needs to be treated unless presented with definitive evidence it will fail and she needs a fusion extension.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

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