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Thread: Dr. Hey deals with the fallout of parents lying about braces to kids

  1. #31
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    Quote Originally Posted by mariaf View Post
    Sharon,

    Are there any orthopedic surgeons in the US prescribing this brace? I think there are a few who might say to parents "OK, if you really want to use the Spinecor instead of, say, a Boston brace, we'll support you and monitor the results" but I personally don't know of any who prescribe it themselves. Of course, the fact that I haven't heard of any means nothing :-)
    Ah that is an important distinction that I didn't think about before you wrote it. I think Hanson in Texas will use Spinecor IIRC but perhaps only in response to a parent insisting. Who knows. It could be that even the handful who will prescribe it will never volunteer it. I can see that given nobody has been able to replicate the results from Montreal. I spoke to one surgeon who said it was his impression that nobody believed the Coilliard/Rivard data. Also, Newton can be heard to say as an aside during a taped presentation that they tried very hard to make Spinecor work (i.e., replicate the Montreal results) but couldn't get it to work. Multiply that times every surgeon in the US and it is easy to see why practically no trained person is using it for AIS anyway. In contrast, I think any brace might work for JIS it seems in at last some cases.
    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. #32
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    Quote Originally Posted by mariaf View Post
    You make a good case. I do recall Dr. D'Andrea once telling me that since David has a single T curve, that if he ever did need fusion it would be pretty straight-forward. She was really talking about losing very little flexibility (vs. a longer fusion), but it makes sense that T fusions would cause fewer issues long term.
    That's the consensus as far as I can tell and as far as I have been told.

    In that regard, it is a small mercy that most curves are (non-high) T curves.
    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. #33
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    Quote Originally Posted by hdugger View Post
    The honest assessment is to say that previous patients have had a significant amount of problems,
    This statement is DIShonest in the extreme. And again, you can't lump all fusions together. That is also DIShonest. Some are largely "solved" as far as anyone can tell and out a few decades.
    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."

  4. #34
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    Quote Originally Posted by hdugger View Post
    But I'd be loathe to promise any child going into fusion surgery that they'd end up with "zero" spinal problems. There is nothing in the evidence to support that number, and making up that rosy picture robs the child of the chance to make an informed decision about their own health and body.
    I would think (and hope) that nobody is promised anything of the sort. What is the saying in medicine 'there are no guarantees'. I find most in the medical profession to be the other extreme (maybe for liability/malpractice purposes). But, for example, before David's VBS, Dr. D'Andrea went over every possible complication that could arising during or after surgery (to the point I was scared to death!), thankfully none of which happened.

    But I think that making a distinction between different types of fusions is something entirely different from promising a future free of any problems, as I'm sure you would agree.
    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)

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  5. #35
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    Quote Originally Posted by Pooka1 View Post
    Ah that is an important distinction that I didn't think about before you wrote it. I think Hanson in Texas will use Spinecor IIRC but perhaps only in response to a parent insisting. Who knows. It could be that even the handful who will prescribe it will never volunteer it.
    I brought it up because I know of several cases where this very thing happened. Parents insisted on using the Spinecor vs. another brace and the surgeons still agreed to follow the child. Thankfully, in some cases the parents listened to the advice of the surgeon to get out-of-brace xrays!!

    In other cases, the parents were told by the surgeon that they didn't use Spinecor because they've seen no evidence of its effectiveness but that the final decision, of course, was the parent's.
    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. #36
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    Quote Originally Posted by mariaf View Post
    I would think (and hope) that nobody is promised anything of the sort. What is the saying in medicine 'there are no guarantees'. I find most in the medical profession to be the other extreme (maybe for liability/malpractice purposes). But, for example, before David's VBS, Dr. D'Andrea went over every possible complication that could arising during or after surgery (to the point I was scared to death!), thankfully none of which happened.
    Exactly. They can only go by the data in hand. That data shows something in every case. Surgeons are not working blind here as has been implied.

    The only guarantees are death, taxes and DDD if you live long enough as far as I can tell.
    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. #37
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    Quote Originally Posted by hdugger View Post
    The *only* reason to fuse a spine in a child is to avoid pain/disability/surgery in the future (since kids are largely painfree).
    Don't get me wrong, fusion is a huge surgery and frankly I'd be pretty scared if my child was facing it (which would be normal, I guess) so it's something I'd want to avoid, if at all possible.

    But I guess another way to put it would be that the only reason to fuse the spine would be to stop a rapidly progressing curve....which to me is actually similar to what you are saying because I think we'd all agree that a curve of, say, 65 or 75 degrees (or whatever the 'end' number might be - maybe higher in some cases) would be very likely to cause pain, and even perhaps some degree of disability.
    Last edited by mariaf; 08-27-2012 at 10:52 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/

  8. #38
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    And parents shouldn't lie about bracing to kids.
    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."

  9. #39
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    And... we finally get back to the real issue.

    Over the years, I've seen this debate dozens of times. Think of the arthritis we'll all have from typing too much! ;-)

    NO ONE knows the truth yet. Doctors and parents are mostly doing what they think is best. All we can do is try to be as informed as possible, and try not to weight one choice over another by exaggerating or lying about it.

    We DON'T know if:
    1. Bracing stops progression
    2. Bracing keeps anyone from requiring surgery, now or later in life
    3. Surgery at a young age keeps kids from requiring surgery later in life
    4. Current surgery techniques lead to less revision



    We DO know that:
    1. Surgery on very large thoracic curves stops much of the potential damage to lungs and heart
    2. Bracing allows some parents to feel that they're not just sitting around waiting for fate to take its course
    3. No matter what we do or do not do, there will always be a possibility of requiring additional treatment


    These debates always come from someone championing one treatment over another. Since we don't know what works and what doesn't work, I don't see why we can't all just say "this is what I tried, and so far, I'm happy with the outcome". There are no absolutes when it comes to the treatment of scoliosis.

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

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