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Thread: Very Interesting Scoliosis Blog

  1. #31
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    Quote Originally Posted by Pooka1 View Post
    Yes but that doesn't mean they operate on sub-surgical cases or do anything to convert sub-surgical cases to surgical ones. Actually it is not possible fora surgeon to convert a sub-surgical case to a sub-surgical case that that fact escapes many.
    I don't think that any of my statements would imply that. We're talking about a session in which a surgeon is counseling a family about bracing. How did we get from there to sub-surgical curves?

    --Linda

  2. #32
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    Quote Originally Posted by Ballet Mom View Post
    I actually think that your doctor is not following standard medical procedure by not prescribing braces, although I would make sure that was true, maybe he was just following your lead and he actually does brace other kids. If he's not prescribing bracing when it is the medical standard, I would think the state's medical oversight board might want to investigate further.
    If he was just following my lead then my kid wouldn't have a brace now, yes?

    When he prescribed the brace he said he didn't or rarely braced prior to seeing some recent data on the Charleston.

    I didn't know then what I know now. If I knew then what I know now I would have asked many more questions about the brace and might very well have refused it unless my kid wanted to try it (which she did). So I would have gotten it because she wanted to try it irrespective of what I know about the bracing literature.

    Can you point me to the medical standard for bracing? I mean that shows it is malpractice not to prescribe it in certain cases. Thanks.

    ETA: Also, how is the BRAIST study being conducted if it is the medical standard to brace? I would think that would never get past the ethicists if there is some medical standard to brace. Can you explain that?
    Last edited by Pooka1; 05-15-2009 at 12:26 PM.
    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 LindaRacine View Post
    I don't think that any of my statements would imply that. We're talking about a session in which a surgeon is counseling a family about bracing. How did we get from there to sub-surgical curves?

    --Linda
    BTW, I fixed the typos in my quote after you quoted me.

    Perhaps I've lost track of the conversation.

    I don't understand how a surgeon's personal preference for surgery could ever translate into whether or not he prescribes bracing. The two things are unconnected.
    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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    "Can you point me to the medical standard for bracing? I mean that shows it is malpractice not to prescribe it in certain cases. Thanks."

    Sorry, I don't "do" legal advice. But I suspect that since you wouldn't have braced in any case, that you and your daughter haven't suffered any damages by his lack of prescribing a brace to your older daughter. Maybe other patients have. You will have to seek your own professional advice if you want to follow that avenue.

  5. #35
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    Quote Originally Posted by Pooka1 View Post
    BTW, I fixed the typos in my quote after you quoted me.

    Perhaps I've lost track of the conversation.

    I don't understand how a surgeon's personal preference for surgery could ever translate into whether or not he prescribes bracing. The two things are unconnected.
    I'm not implying this, but theoretically, if a surgeon subtly (or even unintentionally), makes a brace sound like it's not a great option, that would translate to more surgical patients.

    This debate is much ado about nothing. I'm not implying that Dr. Hey is steering patients away from bracing. I just thought his wording might subtly favor the non-brace choice.

    --Linda

  6. #36
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    Quote Originally Posted by Ballet Mom View Post
    I actually think that your doctor is not following standard medical procedure by not prescribing braces, although I would make sure that was true, maybe he was just following your lead and he actually does brace other kids. If he's not prescribing bracing when it is the medical standard, I would think the state's medical oversight board might want to investigate further.
    Ballet Mom, this statement makes no sense in light of the Braist Study.

    If it were standard medical procedure, ethical concerns, outlined in the Declaration of Helsinki, would have prevented the trial from going forward.

    If what you say is true, then all these hospitals and universities are not following standard medical procedure and should be reported to the medical oversight board.

  7. #37
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    Shoot, I just thought I posted a reply and don't see it anywhere. Is there any possibility it got lost in the system. I don't want to have to come up with it all over again....darn

  8. #38
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    if you dont close your browser you can hit the BACK button multiple times.

    then, to be safe, highlight it all and press control c (to copy to your clipboard), then you can paste it if you keep losing it.

  9. #39
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    Quote Originally Posted by Ballet Mom View Post
    Shoot, I just thought I posted a reply and don't see it anywhere. Is there any possibility it got lost in the system. I don't want to have to come up with it all over again....darn
    That happens to me occasionally. I'm not sure how.

    --Linda

  10. #40
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    Darn it all. Let me see if I can resurrect my thoughts.

    I think when I read the Braist study, they were quite clear that they would only use those families who had no preference one way or the other in bracing. I personally am not a candidate for this study because I would no way risk that for my daughter. Personally, I don't consider this study ethical, and it's probably why they don't have these studies already, but that's just my opinion.

    However, I do note that there seem to be several people just on this board alone who don't wish to brace, perhaps they are candidates if they are actually willing to brace for "science or research's sake. Who knows? Or maybe there are people without insurance, unfortunately in this country it seems to be a lot of people these days, who wouldn't receive any scoliosis care and at least in this study they might have a chance to receive a brace, or at least receive surgery at the end of the study if they didn't get the brace. Of course, it could just be ignorance about scoliosis treatment on the part of the patient's family also, hopefully the study design requires them to inform the patients about the risks of not bracing based on current data. I sat next to one woman with scoliosis in a waiting room who wasn't bracing her daughter due to her experience with bracing - perhaps she would be a candidate. I guess it could be ethical if the study induced people who wouldn't have braced at all, to actually convince them to brace if they drew that lot.

    I recall someone posting that very few people are actually volunteering for this. This agrees with my feeling that most parents are going to do everything in their power to try to stop the progression.

    Will this study, even if done, actually mean anything for the general population when it's done? If you take mainly people who have probably given their scoliosis to their children genetically, is that representative of the general population? Probably not. Perhaps not even because of the designs of these studies....In the study from Dr. Weinstein's book on the Hey blog:

    "they also report from Univ Iowa study that thoracic curves more than 30 degrees at maturity progressed an average of 19 degrees during the 40 yr f/u period, with the fastest progression being in the curves that were 50-75 degrees at time of maturity, which progressed 0.75 to 1 degree per year (40 degrees over 40 yrs)."

    How does an average of Cobb angles from 30 degrees to 75 degrees mean anything to anybody? Maybe I'm missing something. But it seems to me that the 30 degree curve is going to act a lot differently than the 75 degree curve. Why didn't Weinstein break it up into smaller ranges, say five or ten degree increments so it was more meaningful? Did he not have enough participants in the study to make it meaningful? If so, how does it make it meaningful to the rest of the population?

    I'm really out of my turf here, but that's just what caught my attention when you asked me that question. As I say, I am just an amateur, so take my view for what it's worth.

  11. #41
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    Quote Originally Posted by Ballet Mom View Post
    "Can you point me to the medical standard for bracing? I mean that shows it is malpractice not to prescribe it in certain cases. Thanks."

    Sorry, I don't "do" legal advice. But I suspect that since you wouldn't have braced in any case, that you and your daughter haven't suffered any damages by his lack of prescribing a brace to your older daughter. Maybe other patients have. You will have to seek your own professional advice if you want to follow that avenue.
    You grossly misunderstand my point.

    I am not asking for legal advice from you.

    I am questioning your claim that bracing is the medical standard.

    Clearly it is not as can be seen in the BRAIST protocol so I want to see your evidence that it is.

    I know from the literature that surgeons who don't brace are on very firm ground. That's why I asked for your evidence challenging that.

    The surgeons who brace for the parents despite the literature, if they exist, are the ones on shaky ground.
    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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    Quote Originally Posted by LindaRacine View Post
    I'm not implying this, but theoretically, if a surgeon subtly (or even unintentionally), makes a brace sound like it's not a great option, that would translate to more surgical patients.
    How do you know this? For this to be true you would need proof that bracing translates to less surgical candidates than does watching and waiting. I am unaware of proof for this statement. It implies bracing is known to work and that is not the case.

    Did I misunderstand you again?
    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."

  13. #43
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    Quote Originally Posted by concerned dad View Post
    Ballet Mom, this statement makes no sense in light of the Braist Study.

    If it were standard medical procedure, ethical concerns, outlined in the Declaration of Helsinki, would have prevented the trial from going forward.

    If what you say is true, then all these hospitals and universities are not following standard medical procedure and should be reported to the medical oversight board.
    Yes.

    I have posted articles that show the present set of studies are not dispositive. That opens the door for the BRAIST study and others like that.

    It also necessarily follows that bracing is NOT a medical standard. Dr. Hey basically said as much in how his thinking has migrated away from rote formulae on bracing to admitting there is no proof it works.

    Some view this as subtly pushing surgery. I see it as an act of intellectual honesty and admitting his automatic bracing was wrong or at least not supported by evidence. He's brave.
    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. #44
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    Interesting post, I'll have more comments later but I just wanted to say two things:
    1. That must have hurt when you hit the reply key and saw it evaporate (I get the logon screen).

    2. I think I am the only one here actively not bracing a child with a curve within bracing range. Could be wrong on that but feeling kind of lonely since I just came to that realization. But it doesnt have anything to do with money or insurance. (And participants in the Braist study must provide both - there is no free bracing or surgery for participants).

    I have to formulate some thoughts on the rest of your post.

  15. #45
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    Quote Originally Posted by Ballet Mom View Post
    I recall someone posting that very few people are actually volunteering for this. This agrees with my feeling that most parents are going to do everything in their power to try to stop the progression.
    That's right and really not surprising. Some parents will brace despite the literature and some will not brace because they don't think there is enough evidence to date that bracing likely works for most kids. It may work for some. I have my doubts they will get enough kids enrolled in the study.

    As I say, I am just an amateur, so take my view for what it's worth.
    I hope people realize we are ALL amateurs on this site. A researcher posted a few times on the UK forum. But that's it as far as I can tell for both fora.
    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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