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Thread: The ethics of bracing (and PT) with a Scoliscore <41

  1. #106
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    This is an interesting discussion. Based on what I know right now, if my daughter takes this test and has a low score I think we would continue with brace wear in the hopes that it would keep her curve as small as possible. Even if it would never progress past 40*, wouldn't keeping it under 20* be a better alternative than letting it get to 39*? We've been told that she'll probably eventually go back to her pre-brace curve once she's OOB. Would not wearing a brace lead to a larger end curve? I guess that's something for which we don't have an answer.

    I have to qualify this by saying my daughter is a real trooper when it comes to wearing her brace. There are never any fights to get her to wear it. In fact, when I suggest she take it off for a little while and relax she won't do it if she's already had it off for an hour for PE or dance class that day. Maybe my attitude would be a little different if she considered it torture.
    Mom to 11 year old DD who was:
    diagnosed 5/09: 8*L, 8*T
    braced 7/10: 17* L, 25*T, 20*C
    x-ray 11/10: 7*L, 17*T, 20*C (x-ray immediately OOB)
    most recent x-ray 06/11: 17*L, 24*T, 22* C (x-ray 24 hours OOB)

  2. #107
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    More stuff

    http://adjust2it.wordpress.com/2010/...oliosis-brace/

    In the months since ditching the brace, Marissa’s curve has receded from about 24 degrees to 10 degrees, Lonner said. It’s not clear why she improved so much, although natural regression does occur, he said.
    A regression of 14*.

    Also, there were 697 patients in the study and 75%, 24% and 1% were low, medium and high risk, respectively. Therefore:

    Low - ~523
    Medium - ~167
    High - ~70

    Also they stated the following:

    Marissa is among the 2 percent to 4 percent of all youngsters older than 10 diagnosed with AIS, including about 30,000 who require braces and 18,000 who need spinal fusion surgery each year.
    This seems to be saying that 60% of kids who wear braces go on to have fusion. This is not consistent with the claim that only about 20% of kids can be considered bracing failures. Can anyone verify the numbers in the quoted statement?
    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. #108
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    Quote Originally Posted by JessicaNoVa View Post
    Even if it would never progress past 40*, wouldn't keeping it under 20* be a better alternative than letting it get to 39*?
    Yes of course but even if it does, you will never know if it was the brace or just natural history. See my post about what happened to the girl in the video AFTER they took the brace off.

    There is a girl on the group who had a reduction in her lumbar curve while in brace. Because bracing is not claimed to reduce curves permanently as you stated yourself, that is almost certainly a spontaneous reduction not connected to being braced as in the girl in the Lonner video.

    Also, there is no reason to assume your daughter would progress to 39*. Rather the odds are stacked the opposite way.
    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. #109
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    Quote Originally Posted by Pooka1 View Post
    Yes of course but even if it does, you will never know if it was the brace or just natural history. See my post about what happened to the girl in the video AFTER they took the brace off.
    Right, which is why I said that's something for which we wouldn't have an answer.

    Quote Originally Posted by Pooka1 View Post
    Also, there is no reason to assume your daughter would progress to 39*. Rather the odds are stacked the opposite way.
    I see what you're saying, but if it did progress to 39* would we look back and wonder if it might have been less if she had worn a brace? For us, right now, her wearing the brace is the best thing we've got. And I'm fully aware that she might progress to 39* even with the brace and we'll look back and say, "well, that was a waste".
    Mom to 11 year old DD who was:
    diagnosed 5/09: 8*L, 8*T
    braced 7/10: 17* L, 25*T, 20*C
    x-ray 11/10: 7*L, 17*T, 20*C (x-ray immediately OOB)
    most recent x-ray 06/11: 17*L, 24*T, 22* C (x-ray 24 hours OOB)

  5. #110
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    Quote Originally Posted by JessicaNoVa View Post
    Right, which is why I said that's something for which we wouldn't have an answer.



    I see what you're saying, but if it did progress to 39* would we look back and wonder if it might have been less if she had worn a brace? For us, right now, her wearing the brace is the best thing we've got. And I'm fully aware that she might progress to 39* even with the brace and we'll look back and say, "well, that was a waste".
    I think you know the score and have a great attitude. (smiley face)
    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."

  6. #111
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    Quote Originally Posted by Pooka1 View Post
    This seems to be saying that 60% of kids who wear braces go on to have fusion. This is not consistent with the claim that only about 20% of kids can be considered bracing failures. Can anyone verify the numbers in the quoted statement?
    Whatever lay yahoo wrote this comment is simply assuming that all the kids who went on to fusion were first braced. That is clearly not the case. (smiley face) I assumed many if not most were because bracing is still the standard of care despite the evidence case bcaking it up.

    But if the 20% brace failure rate is correct, and assuming the other numbers are correct about bracing and fusion then, in the limit, the number of kids who wore a brace and were fused accounted for only 1/3 of the fusions (20% of 30,000 compared to the 18,000). Is it possible that 2/3 of fusions are caught so late that they are not braced? Maybe. In my one daughter's case, she wasn't caught late but her curved moved very quickly. Maybe experienced guys know that very fast moving curves don't generally respond to braacing. Who knows. Maybe I'll ask the surgeon in June when I next see him, maybe for the last time.
    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. #112
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    Quote Originally Posted by JessicaNoVa View Post
    This is an interesting discussion. Based on what I know right now, if my daughter takes this test and has a low score I think we would continue with brace wear in the hopes that it would keep her curve as small as possible. Even if it would never progress past 40*, wouldn't keeping it under 20* be a better alternative than letting it get to 39*? We've been told that she'll probably eventually go back to her pre-brace curve once she's OOB. Would not wearing a brace lead to a larger end curve? I guess that's something for which we don't have an answer.
    Yes, that's the big question.

    One of the papers I read from the scolioscore people emphasized that the other method of determining progression (based on xray, growth, etc) was inferior in part because it only told you whether or not someone was likely to progress 5 to 10 degrees, instead of telling you whether or not they'd progress to surgical.

    But, IMO, knowing whether or not they'll progress 5 to 10 degrees *is* the question - it provides alot more information then simply whether or not they'll progress to surgery.

    Again, I think the problem is that scoliosis patients are managed by surgeons, and surgeons (reasonably) tend to organize their thinking around surgery. But, as parents, surgery is not the main consideration - lifelong health is. So, for a parent, knowing whether your 20 degree child will progress past 25 degrees by maturity gives a far better view of their future then knowing whether they'll require surgery before they're 21.
    Last edited by hdugger; 01-06-2011 at 10:44 AM.

  8. #113
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    Quote Originally Posted by Pooka1 View Post
    Lonner didn't develop the test. Lonner is a surgeon in NYC.
    To phrase it more precisely, then, if the physician partnering with the geneticists at Axial Biotech to develop the scolioscore test isn't saying that he's relying solely on its results. I'm guessing there's a reason for that.

  9. #114
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    Quote Originally Posted by hdugger View Post
    Yes, that's the big question.

    One of the papers I read from the scolioscore people emphasized that the other method of determining progression (based on xray, growth, etc) was inferior in part because it only told you whether or not someone was likely to progress 5 to 10 degrees, instead of telling you whether or not they'd progress to surgical mind.

    But, IMO, knowing whether or not they'll progress 5 to 10 degrees *is* the question - it provides alot more information then simply whether or not they'll progress to surgery.
    The detection of 5* or 10* progression is simply the measurment error. That's the minimum AFTER THE FACT progression you can determine from looking at sequential radiogrpahs. You can't "know" a curve will increase 5 to 10 degrees just from a radiograph. Scoliscore is superior from the standpoint that it can predict BEFORE THE FACT if there will be progression >40%.

    Reading radiographs tells you what happened. Doing scoliscore, depending on the score, can tell you if prorgession will be limited to <40*. As such it is incredibly more powerful than reading radiographs.

    Again, I think the problem is that scoliosis patients are managed by surgeons, and surgeons (reasonably) tend to organize their thinking around surgery. But, as parents, surgery is not the main consideration - lifelong health is. So, for a parent, knowing whether your 20 degree child will progress past 25 degrees by maturity gives a far better view of their future then knowing whether they'll require surgery before they're 21.
    There is no method of prediction whether a child will progress from 20* to >25* at maturity. Reading radiographs won't get you that.

    And knowing whether your child will reach surgical range before maturity is huge in my opinion for several reasons.
    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."

  10. #115
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    Quote Originally Posted by hdugger View Post
    To phrase it more precisely, then, if the physician partnering with the geneticists at Axial Biotech to develop the scolioscore test isn't saying that he's relying solely on its results. I'm guessing there's a reason for that.
    Is he any different than the other surgeons giving the tests to their patients? Are they all "partners" in the research?
    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."

  11. #116
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    Quote Originally Posted by Pooka1 View Post
    The detection of 5* or 10* progression is simply the measurment error. That's the minimum AFTER THE FACT progression you can determine from looking at sequential radiogrpahs. You can't "know" a curve will increase 5 to 10 degrees just from a radiograph. Scoliscore is superior from the standpoint that it can predict BEFORE THE FACT if there will be progression >40%
    I'm repeating the comparison from the scolioscore site. They compared their method to another method which predicted 5 to 10 degree progression, and dismissed the other method because it didn't focus on the important measure of progressing to surgery.

    That's a very surgical-centric viewpoint, IMO. I understand why surgeons think it's the only thing that matters, but it's not the only thing that matters to parents.

  12. #117
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    Quote Originally Posted by hdugger View Post
    To phrase it more precisely, then, if the physician partnering with the geneticists at Axial Biotech to develop the scolioscore test isn't saying that he's relying solely on its results. I'm guessing there's a reason for that.
    They cover this idea somewhat in the discussion. How two people can have a similarly high scoliscore but one progresses to surgery and the other doesn't. The basic explanation is that, for both people, the genetic influence is present but the environmental influences are most likely different.

    I would also opine/hypothesize that the range and variability of curves <40° and scores <180 point to a gravity type threshold. Once a curve progresses to a certain extent, it becomes difficult for the body to stabilize from a biomechanical stand point. The genetic influence for a larger curve is present, but the body is able to stabilize until it reaches ~40°. Then an entirely different set, or at least an additional set, of influences are acting on it.

  13. #118
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    Quote Originally Posted by hdugger View Post
    I'm repeating the comparison from the scolioscore site. They compared their method to another method which predicted 5 to 10 degree progression, and dismissed the other method because it didn't focus on the important measure of progressing to surgery.
    But what is this other method? Isn't it reading and comparing serial radiographs and getting the answer AFTER THE FACT?

    That's a very surgical-centric viewpoint, IMO. I understand why surgeons think it's the only thing that matters, but it's not the only thing that matters to parents.
    No and it isn't the only thing that matters to surgeons. The problem is there is nothing available at the present time to help on any other front.

    The issue is you are assuming they don't care about certain things for reasons OTHER than they simply have nothing to offer patients to help. All the caring in the world about keeping sub-surgical curves even more sub-surgical isn't going to produce an effective conservative treatment out of thin air. Surgeons do what they can.
    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."

  14. #119
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    Quote Originally Posted by Pooka1 View Post
    Is he any different than the other surgeons giving the tests to their patients? Are they all "partners" in the research?
    According to his site, he partnered with them during the development of the test, not just in using the test after it was developed.

  15. #120
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    Quote Originally Posted by hdugger View Post
    According to his site, he partnered with them during the development of the test, not just in using the test after it was developed.
    Wouldn't this mean he is one of (several?) surgeons provided the patients that went into the calibration set that went into the subject article? They had to come from somewhere.

    Were all the patients in the calibration set Lonner's patients?
    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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