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Thread: Scoliosis Specialists

  1. #61
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    Quote Originally Posted by christine2 View Post
    My daughter has absolutely no negative feelings (at this time) toward her brace. In fact when I wash it she is bugging me to put it back on. Last week a snap broke, we were out of x tras so she had to sleep without it she was literally in tears over it.
    My daughter is in a hard bending brace at night (Charleston) and is uncomfortable physically without it because it probably feels good to counterbend the curve. She isn't uncomfortable emotionally over not wearing the brace because there is no rational reason to be so.

    If your daughter is physically uncomfortable without the brace then maybe it is providing support in lieu of her muscles and similar to a hard brace (despite the claims of Spinecor otherwise). Not sure what other explanation there could be for that.

    If your daughter is emotionally uncomfortable because of a fear of what will happen if she doesn't wear the brace then that's a large burden for such a young child in my opinion. That fear is not supported by any evidence I have seen.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
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    "We are all African."

  2. #62
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    Okay so then are you saying she is physically uncomfortable without the brace? What does that mean if so?
    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. #63
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    Not looking to jump into the fray here at all, I am just confused as well as to why a 1 degree curve would be braced. It goes against everything I have ever been told or read or understood about scoliosis. I know several people (adults now) who have had curves of, say, 5 or 10 degrees and they were never braced.

    If we braced everyone with a 1 degree curve and above, then nearly the entire population would be braced.

    While I understand the difference being that the child in question once had a 30+ degree curve (which would be different than finding a new 1 degree curve), bracing at this stage still seems like overkill to me. I'm NOT criticizing here - just VERY confused. I tend to like to "understand" things and this one truly puzzles me.

    My son was initially diagnosed in 2000 - and in the past 8 or 9 years EVERY ortho I have ever spoken to, or read a quote from, has said that if they could get a child's curve down under 10 or 15 (some even said 20) degrees, then they would stop bracing at that point (I assume because statistics show that when a curve is reduced that low, it is much less likely to progress). I know that, for example, following VBS if a curve is brought below 20 degrees there is much less chance of it going back up according to Dr. Betz.

    I hope nobody is offended by my wanting to understand the doctor's reasoning here with regard to continued bracing of a curve that has basically disappeared. That's how we learn.
    Last edited by mariaf; 01-05-2009 at 08:58 PM.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  4. #64
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    I suspect the doctors have some reason if they continue the bracing with no curve remaining.

    I wonder if the doctors have ever take kids with dramatic in-brace curve reductions out of the brace for a week or a month and then see what happens. Not saying to do this during a growth spurt but just to see how long the correction out of brace holds before and after a growth spurt.

    I mean I wonder what the doctors would say about this. Is the claim now that these children have no scoliosis but only had scoliosis or have a tendency towards scoliosis? I'd just like to know how far they would go in their claims about this.

    Hard bracing is said to, at best, prevent a curve from worsening. What is the case with Spinecor? Is there any evidence to date in hand that Spinecor can actually permanently reduce a curve? Is there any evidence that Spinecor holds the curve such that growth corrects the curve like has been seen with VBS?

    If so, I think it is the first brace to ever accomplish that. It would be huge. To date, only surgery, fusion and non-fusion, can reduce a curve permanently as far as I know. Someone correct me if I'm wrong.
    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."

  5. #65
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    Quote Originally Posted by Pooka1 View Post
    To date, only surgery, fusion and non-fusion, can reduce a curve permanently as far as I know. Someone correct me if I'm wrong.
    I would agree that, to my knowledge at least, this is correct.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  6. #66
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    I just wonder what the present claims are for Spinecor and JIS. It would be interesting if Colliard and Rivard would say what they are.

    Are they saying that Spinecor can straighten a curve permanently, perhaps if the child wears it through the growth spurts until skeletal maturity?

    Or are they saying that the brace will prevent it from worsening but that the curve can never be decreased from the largest Cobb angle measured prior to bracing?

    Do they have JIS patients yet who were braced through growth spurts and have reached skeletal maturity and have a stable Cobb angle less than the highest measured at any point?

    If they do, it will be huge.
    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."

  7. #67
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    Yes, it would be huge. I would be especially interested, as I'm sure everyone (parents, patients and doctors) would, as to HOW the brace can "permanently correct" a curve. I'm not saying it does or it doesn't - but as you mentioned, Sharon, if in fact it CAN do this, then that information should be shared/published so that others can benefit from it. Up until now, the only proven way to correct a curve permanently has been surgically. So, I would think if someone discovered a non-surgical way to do this, it would be BIG news.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  8. #68
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    It's certainly possible that Spinecor is new enough that they have no JIS patients who have been braced through growth spurts and have reached maturity with a stable Cobb angle less than any maximum in the past.

    In re mechanism of permanently reducing a curve, I'm guessing it could be the same as VBS. That is, the spine is held by the brace strongly enough in a position that disallows growth that adds to curvature and allows growth that corrects the curvature.

    While that's possible, then I have to wonder why the hard braces, especially the bending kind, don't work far better at decreasing curves.

    In re muscle atrophy and bracing, all braces, if they are doing anything, do some of the work that certain muscles do.
    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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