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Thread: The Braist Study

  1. #31
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    I have a fourth question... were they bracing kids with curves >40* at any point?

    There is a reason the bracing protocol has an upper limit of 40*. I am guessing that reason is because bracing is known not to work on curves >40*. I therefore assume they pulled kids out of brace if they were >40* despite not being skeletally mature.

    This is an ethical question that I hope is answered somewhere.
    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."

  2. #32
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    My reply was for the parents that are bracing their kids. It's a hard call no matter what.

    From MY training, ALL data are to be included in a published paper. I haven't read the paper, but assumed that they included it. It does bother me that there wasn't any curve typing. Again, I assumed a GOOD paper would contain that information. It's those kids that have curves >40o that, in my opinion, are most at risk as adults. I don't consider ending up between 40o and 50o "success".

    I think we can do better by our kids than bracing. Although, I'm not recanting my statement for the fact that parents that brace early on may be heading off progression in less aggressive curves. Again, that's the big question, whether bracing does ANY good or not.

    My 5y/o grandson is showing signs of early scoliotic development. I'm not quite sure how we'll handle it. I'd much rather go for stapling than bracing, personally.
    Be happy!
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  3. #33
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    I need to go back and read through the inclusion criteria, but as I recall, awhile into the study, they started admitting post-menarchal girls as well as curves 20-25 degrees. As we all know these two groups do not carry the same risk of progression as the pre-menarchal girl with a 25-40 degree curve. I would like to know how many kids from the first two categories were included, because to me that would artificially inflate the "success" group.

    I have to agree with Pooka that this is not what I expected from this study. I still have to go read Dr Hey's comments because now I am very curious!

    It makes me furious to know that I suffered emotionally so much in my brace, as many kids do, only to hear that it was almost surely unnecessary. That's a very bitter pill.
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  4. #34
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    Quote Originally Posted by leahdragonfly View Post
    I need to go back and read through the inclusion criteria, but as I recall, awhile into the study, they started admitting post-menarchal girls as well as curves 20-25 degrees. As we all know these two groups do not carry the same risk of progression as the pre-menarchal girl with a 25-40 degree curve. I would like to know how many kids from the first two categories were included, because to me that would artificially inflate the "success" group.

    I have to agree with Pooka that this is not what I expected from this study. I still have to go read Dr Hey's comments because now I am very curious!

    It makes me furious to know that I suffered emotionally so much in my brace, as many kids do, only to hear that it was almost surely unnecessary. That's a very bitter pill.
    Gayle, I am so glad you post on this forum. The perspective of an adult looking back on bracing is or should be valuable to patients and parents facing a bracing decision. It would matter to me if I was back at that point with a kid.

    Thanks so much.

    Sharon
    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. #35
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    Quote Originally Posted by leahdragonfly View Post
    I need to go back and read through the inclusion criteria, but as I recall, awhile into the study, they started admitting post-menarchal girls as well as curves 20-25 degrees. As we all know these two groups do not carry the same risk of progression as the pre-menarchal girl with a 25-40 degree curve. I would like to know how many kids from the first two categories were included, because to me that would artificially inflate the "success" group.
    Excellent point. And we are going to have to make DAMN SURE they weren't stacked in the braced group. Damn sure. Imagine the fall out if these two groups were overrepresented in the braced group? Would there be any credibility left whatsoever?
    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. #36
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    While I understand all of your observations, and in general agree, I think we have to ask ourselves if the authors had any motivation to "cheat" the data. I didn't read the full article yet, so didn't see the disclosures, but I doubt any of the authors stand to make any substantial money from the manufacture or sale of braces. Is it just the glory? For many years, Weinstein's chart of progression risk was considered the gold standard. That's no longer the case, so maybe he feels the need to be back in the limelight.
    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

  7. #37
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    Quote Originally Posted by LindaRacine View Post
    While I understand all of your observations, and in general agree, I think we have to ask ourselves if the authors had any motivation to "cheat" the data. I didn't read the full article yet, so didn't see the disclosures, but I doubt any of the authors stand to make any substantial money from the manufacture or sale of braces. Is it just the glory? For many years, Weinstein's chart of progression risk was considered the gold standard. That's no longer the case, so maybe he feels the need to be back in the limelight.
    If there is politics, I would not lay blame at the feet of the researchers necessarily. I think the author comments as related by Hey can be viewed as somewhat cautious w.r.t. the paper's conclusions. I would need more information starting with the ACTUAL STUDY DATA. That would be novel in this case.
    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."

  8. #38
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    Check the link posted earlier... The paper is free to view. And it's not that long.

    The baseline data has plenty of detail. There is a maturity scale as well as different curve types and whatnot. Either in the paper or in the supplementary info. MY critique is primarily with the end point data. The average curve at baseline was ~35 in all groups (IIRC). The end point curve size would be good to know, although I don't think average is the best measure for curve size. Median is probably better unless the data are REALLY normally distributed.

    The study was stopped in January 2013.

    As far as any kind of nefarious motives, I tend to side with the scientists and give them the benefit of the doubt. It's not that I doubt their data as much as I question how meaningful it is if "success" is determined as <50. If the pre-treatment group is 33 and the "success" group is 48, well then I'm not sure I'd consider that to be a great outcome. The brace group had fewer surgeries than the observation group, and I think that is real. I like the creativity they used to randomize or to self select the treatment. I like the stratification of brace wearers to time in brace. I think they did an amazing amount of work to do a serious study and to control for a BUNCH of things are have been traditionally difficult, if not impossible, to do. They might have had a very strict limit on the amount of tables and figures they could have, which is why they probably had the supplemental info. So I WANT to say they left out the end point data as somewhat of an oversight because they had a bunch of other stuff to report. But, having published, the scientist knows their data better than anyone. To not mention anything about the end point other than success/failure percentage.... makes it tough to believe it was an oversight and probably means it brings the results into question/doubt. It would be great if I were wrong.

  9. #39
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    Cognitive Dissonance

    Quote Originally Posted by LindaRacine View Post
    While I understand all of your observations, and in general agree, I think we have to ask ourselves if the authors had any motivation to "cheat" the data. I didn't read the full article yet, so didn't see the disclosures, but I doubt any of the authors stand to make any substantial money from the manufacture or sale of braces. Is it just the glory? For many years, Weinstein's chart of progression risk was considered the gold standard. That's no longer the case, so maybe he feels the need to be back in the limelight.
    Linda,

    I doubt any of us who are currently discussing the study results think or suggest that the authors have a potential financial gain from promoting bracing. Clearly that is not the case. My theory is one of possible cognitive dissonance on the part of researchers, and/or fear of massively going against the tide of the medical profession. For many generations now bracing has been the standard of care. It was something orthos could offer to parents and kids instead of telling them there is no effective treatment other than watch and wait until possible surgery. Out "fix-it" attitude towards medical care causes people to expect doctors to be able to fix their child's problem. I think most people generally have heard of bracing for scoliosis, so to now be told that it is actually not very effective (even though we have been subjecting kids to it for years) is unacceptable. Physicians and researchers are human, too, and can not help but have some preconceived ideas about scoliosis and its treatment. Hence the cognitive dissonance...i.e...."Scoliosis is a disfiguring disease of children, there MUST be an effective non-surgical treatment for it by now." It gives parents and doctors something to "do" while observing the scoliosis, a sense of control over it. Not to mention it is a huge source of billable orthopedic visits.

    Braist was supposed to be the be-all/end-all to the brace discussion, and now the results really aren't all that. The study was difficult to recruit for and took several years longer than planned due to this. The researchers apparently underestimated how much families want to choose their treatment...Imagine that! I think the majority of orthos out there want to be able to offer some non-surgical treatment to families, so there is a huge amount of pressure from the ortho community to maintain the status quo.

    I personally am appalled that we are bracing 9 kids to prevent one surgery. This is an unimaginable burden on the child and family, not to mention economically. I truly hope that the take-home message from Braist is that we are bracing way too many kids unnecessarily. Hopefully the researchers are combing over their data to hone in on exactly which set of children actually benefit from bracing. That would be an admirable end result of the study.
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  10. #40
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    Quote Originally Posted by leahdragonfly View Post
    Hopefully the researchers are combing over their data to hone in on exactly which set of children actually benefit from bracing. That would be an admirable end result of the study.
    Amen!

    --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

  11. #41
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    Quote Originally Posted by Kevin_Mc View Post
    Check the link posted earlier... The paper is free to view. And it's not that long.
    Yes I read it.

    The baseline data has plenty of detail. There is a maturity scale as well as different curve types and whatnot. Either in the paper or in the supplementary info. MY critique is primarily with the end point data. The average curve at baseline was ~35 in all groups (IIRC). The end point curve size would be good to know, although I don't think average is the best measure for curve size. Median is probably better unless the data are REALLY normally distributed.
    Yes I am referring to that lack of end point data also. They may be saving it for another pub. Also, I made the point upthread about wanting to see the median which never seems to be shown in these papers. I think there are some papers out there that would have different conclusions if they used the median rather than the average. In a highly heterogeneous condition like AIS, I would imagine the median should be shown alone or along with the average. I think if these paper showed both, the issue of different conclusions might become obvious if only because of the small number of cases in each data bin.

    I agree with your other points.
    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."

  12. #42
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    Hey everyone,
    Bracing isn't really my specific area of interest just yet, though in time it may be.
    The best application for scoliosis biomechanics (my interest) is in bracing.. and hardware too I suppose..
    In time, I will focus on bracing.

    I see a future where EOS 2D/3D Imaging System is coupled with my knowledge of curve pattern biomechanics and 3D SLS printing.
    So that a patient would get an EOS 3D X-Ray which would send that data to a processing and manufacturing facility.
    A computer with patented software from my knowledge of scoliosis biomechanics would process that data and then it would be sent to a 3D SLS printer for manufacturing.
    What you would have is a brace designed specifically to counter the progression from the curve pattern biomechanics and factors relating to growth, and designed as both a perfect fit and 100% effective for doing whatever it is meant to do, with minimum coverage. The brace would be manufactured and shipped to the patient or orthotist in under 48hrs.
    Diagnosis and Manufacturing - Check out the videos on the Manufacturing site to see how it would be made.

    Anyway, my futuristic innovative ideas aside, I note that you guys are upset or confused that the authors have not given enough info.
    Now I don't want to state the obvious, but have you guys actually thought of emailing the authors and just asking for the extra info you want??
    Why don't you just formulate a list of questions and email them and ask them??

    Its easy enough to get surgeons and researchers contact email addresses..
    I'm sure if you email them they will respond..
    If you don't ask, you don't get..

    - Scott

  13. #43
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    Quote Originally Posted by Pooka1 View Post
    Gayle, I am so glad you post on this forum. The perspective of an adult looking back on bracing is or should be valuable to patients and parents facing a bracing decision. It would matter to me if I was back at that point with a kid.

    Thanks so much.

    Sharon
    Just an observation on this point. While Gayle would have NOT gone for the bracing had she known she would end up having surgery anyway, my DIL feels quite the opposite. I can't understand it. She feels that the brace basically ruined her adolescence and made her self-conscious, horribly uncomfortable, and unable to eat. But she still clings to the thought that she would have been worse off had she not worn the brace. I don't know if this was doctor induced jargon to make her feel better about ending up with surgery despite bracing, or whether she came up with the idea to rationalize and convince herself that the brace did some good and her curve would have been worse. It baffles me because the brace has such a HUGE negative impact on her self esteem. She still carries around the emotional scars of the bracing trauma. It's so sad. But the question remains: Would she have progressed more rapidly to a more severe and disfiguring curve? As it is, they were not able to eliminate her rib hump because there was so much rotation. She was basically spiraling around her spine. Yet, all the "professionals" could focus on was that stupid Cobb angle. It was really much worse than a typical 48o curve.

    My heart breaks for these people. We really need to know IF bracing helps stave off a more rapid curve progression until the child is skeletally mature. Even IF these aggressive curves end up having surgical intervention, is the possibility there that the deformities would be so much larger that the surgery itself would be more complicated and dangerous? Is there even a way to test that?

    If at the end, as I've stated before, a curve ends up between 40 and 50 degrees, that's a flat out failure. That range is large enough to cause quite a bit more damage than some might think. For instance, my heart is deformed from this range of curve. Not typical, I know. But they need to quit focusing on that stupid Cobb angle and LOOK at the person's curve, degree of rotation, amount of hyper/hypo-kyphosis etc. Then and only then will they be able to come up with really effective treatment plans. This study is a blanket study and not as useful, in my opinion, as many people may think it is. Although, the general consensus here seems to be that it's pretty useless from what I've read. I'm of the opinion that the "conclusions" of these guys may me more deleterious to kids in the sense that the orthos will read it and say to themselves, "Yep, my treatment plan for kids is just fine." with the end result being no change what-so-ever in the protocol for treating scoliosis.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  14. #44
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    Evidence about brace effectiveness


  15. #45
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    A link to the actual article has been posted. Why post an article about the article??? Please think for yourself.
    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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