Page 3 of 5 FirstFirst 12345 LastLast
Results 31 to 45 of 69

Thread: Does bracing work? style and success to date

  1. #31
    Join Date
    Dec 2008
    Posts
    494
    Quote Originally Posted by LindaRacine View Post
    I know Alf Nachemson, and I'd be really surprised if he intentionally stacked the deck in his brace study.
    The stacking the deck comment that Dickson made was not meant to imply malfeasance. I think he was pointing out the irony. Nachemson published the results of the study (that took 10 years to complete) and in the very same monthly edition of the scientific journal, someone else published the results of a study that showed there was a different prognosis for different curves. No one said he should have figured this out before hand because they didn’t know it.

    It is interesting to read Lori Dolans comment from the other forum offering Dr Nachemson’s take on the Braist study:

    Dr. Nachemson was on the protocol planning committee for BrAIST. He felt it was a worthy, although very difficult, undertaking. He felt there were still questions to answer.

    As Sharon points out, that curve stratification is just one of potentially many other factors to consider. For example, the whole Risser 0 thing that Sanders noted. Girls are usually Risser 0 for the first 5 stages (out of 8) on the digital skeletal age (DSA) assessment scale. And there is a difference in expected outcome for a specific curve in a girl with DSA of 1 compared to a DSA of 5.

    So, if you take 100 girls risser 0 and put them into two groups (braced and unbraced) and then it turns out that most of the unbraced girls were DSA 1 and the braced girls were DSA 5, the results would surely show that bracing was effective. (and of course, the converse would show exactly the opposite results).

    BTW, Sharon, your point about a possible reason why Dolan excluded the exercise and bracing studies from the metanalysis is a good one. I had not thought of that.

  2. #32
    Join Date
    Dec 2008
    Posts
    494
    Quote Originally Posted by hdugger View Post
    Medicine really is not ruled by research. It's much more of an art then a science. Maybe it shouldn't be that way, but that's the way it is.

    Hi Hdugger. Things are slowly getting better on the medical research front.
    Here is a discription of one of the first bracing studies for scolioisis:


    … the efficacy of such treatment, whether achieved by corsets or plaster casting, seems to have been continually questioned. See, for example, the two reports of Freiberg et al from 1914 and 1915 and their highly equivocal conclusions. Although the methodology of this study reads strangely 85 years later (an appointed committee of three specialists inspected the work of four other leaders in the field), they completed their investigation by sending out a simple questionnaire to physicians asking if they had personal experience of undoubted benefit or cure from plaster or removable jacket, what their methodswere, and would they submit records as evidence. At the time of writing (Freiberg et al, p. 18), they had received 50 replies but no evidence, forcing them to state “The Committee therefore concludes that of the fifty men who have replied. . . none is in possession of material evidence with which to give an affirmative answer to Questions 1 and 2.”

    This old turn of the last century research was related in Goldberg 2001. Heck, maybe the first Equipoise study of scoliosis.

  3. #33
    Join Date
    Dec 2008
    Posts
    494
    I added one more paper to the "reading list" above

  4. #34
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    Quote Originally Posted by concerned dad View Post
    Hi Hdugger. Things are slowly getting better on the medical research front.
    Here is a discription of one of the first bracing studies for scolioisis:


    … the efficacy of such treatment, whether achieved by corsets or plaster casting, seems to have been continually questioned. See, for example, the two reports of Freiberg et al from 1914 and 1915 and their highly equivocal conclusions. Although the methodology of this study reads strangely 85 years later (an appointed committee of three specialists inspected the work of four other leaders in the field), they completed their investigation by sending out a simple questionnaire to physicians asking if they had personal experience of undoubted benefit or cure from plaster or removable jacket, what their methodswere, and would they submit records as evidence. At the time of writing (Freiberg et al, p. 18), they had received 50 replies but no evidence, forcing them to state “The Committee therefore concludes that of the fifty men who have replied. . . none is in possession of material evidence with which to give an affirmative answer to Questions 1 and 2.”

    This old turn of the last century research was related in Goldberg 2001. Heck, maybe the first Equipoise study of scoliosis.
    There is nobody out there who knows what the heck they are talking about who would claim there is evidence bracing works. I see nothing has changed in decades and decades.

    This stuff is clearly a very tough nut to crack research-wise. I give these guys all the credit in the world for at least trying. But I question the ethics of enrolling even a single kid in an uncontrolled bracing study when you can't get an answer even in principle. The inability to understand the limitations of the uncontrolled studies combined with the inability to understand the limitations of the poorly controlled studies is the reason bracing is still prescribed. Not a good situation.

    Bracing is and remains an experimental treatment and I think surgeons need to honestly present it using that term so parents can be honestly informed of the state of the art.

    Now I think the nighttime braces like my daughter wore are a gray area. Our surgeon said he never would have put my daughter in a 23/7 brace but thought it was worth a try in a nighttime only brace. My daughter tolerated it well enough and all that matters now is that she doesn't regret the attempt. I am sort of glad I didn't know the bottom line on bracing at that time because I would have pushed back on the brace had I known instead of just blindly agreeing to the brace. All bracing, not just the nighttime bracing is too experimental at this point for my taste but if my daughter wants to try it, okay.
    Last edited by Pooka1; 10-21-2009 at 04:09 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."

  5. #35
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    Quote Originally Posted by concerned dad View Post
    I added one more paper to the "reading list" above
    That post really should be a sticky at the top of the bracing forum.
    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
    Join Date
    Dec 2008
    Posts
    494
    I appreciate the comment but I really think this whole discussion should be moved to the Research thread.

    Balletmom had a very valid point about the second doctors comment

    Once the decision is made, encouragement for compliance is important. As Texmarinemom says, and I'm paraphrasing here, "no brace is going to work sitting in the closet". Having a frank discussion casting doubts about efficacy as we are doing here can be damaging.

    And I should add, (even though Linda once referred to me as "anti bracing"), I could envision, based on what I know now, bracing my daughter if her circumstances were different. I would, however, likely lean toward a night brace (or, <gasp>, maybe even a SpineCor if she were very young).

  7. #37
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    Quote Originally Posted by concerned dad View Post
    Having a frank discussion casting doubts about efficacy as we are doing here can be damaging.
    Or maybe empowering.
    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
    Join Date
    Oct 2008
    Posts
    299

    Perhaps a new thread should have been started...

    As I read the initial post, this one was supposed to be for people to share their personal experiences with bracing with the poster, not another discussion of the bracing literature.

    Linda, can the "research-related" posts be moved to the research section under another title, and this thread be put back on track?
    Last edited by mamandcrm; 10-21-2009 at 02:33 PM.
    mamandcrm

    G diagnosed 6/08 at almost 7 with 25*
    Providence night brace, increased to 35*
    Rigo-Cheneau brace full-time 12/08-4/10
    14* at 10/09 OOB x-ray
    11* at 4/10 OOB x-ray
    Wearing R-C part-time since 4/10
    latest OOB xray 5/14 13*
    currently going on 13 yrs old

    I no longer participate in this forum though I will update signature from time to time with status

  9. #39
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    Quote Originally Posted by hdugger View Post
    It's not - but the same might be said of virtually every medical treatment, given the state of medical literature.

    Given that it is what it is, and that pouring through the literature is not helping to clarify anything, the best advice on bracing is to follow your Dr's advice. We're listening to their "beliefs" on everything else
    Actually, I'm not so sure we are dealing with belief versus evidence on certain other things.

    If you would be so kind, I'd be very interested in your professional opinion on that science-based medicine blog I posted...

    http://www.sciencebasedmedicine.org/

    It's sort of like Quackwatch but seems to have a larger staff of medical folks contributing as far as I can tell. And it doesn't shy away from criticizing the political nonsense that contributes to the problem.

    Thanks.
    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. #40
    Join Date
    Aug 2009
    Posts
    1,164
    I'll post my reply here, before Linda moves it all over to research, but what I'm trying to say is that most aspects of scoliosis treatment are far from nailed down. That includes everything from major questions (like are you saving the spine by putting off surgery as long as you can, or are you actually saving it by having the surgery as early as possible even with a non-progressing patient) to details (like how to best curve the rods). If there are large controlled studies about these question, I haven't run across them.

    That leaves me a little puzzled about why we always have these long, detailed "but is it science" discussions about bracing while deferring to our doctors' experience completely on all surgical matters.

    I had the same response to the "science-based medicine" blog. Yes, it's true that many of these alternative treatments haven't been tested. But, then again, neither have many of the mainstream treatments. It just feels like a mindset, instead of a genuine exploration of what's working and what's not.

    Then again, maybe I'm just feeling contrary

  11. #41
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    Quote Originally Posted by hdugger View Post
    I'll post my reply here, before Linda moves it all over to research, but what I'm trying to say is that most aspects of scoliosis treatment are far from nailed down. That includes everything from major questions (like are you saving the spine by putting off surgery as long as you can, or are you actually saving it by having the surgery as early as possible even with a non-progressing patient) to details (like how to best curve the rods). If there are large controlled studies about these question, I haven't run across them.

    That leaves me a little puzzled about why we always have these long, detailed "but is it science" discussions about bracing while deferring to our doctors' experience completely on all surgical matters.

    I had the same response to the "science-based medicine" blog. Yes, it's true that many of these alternative treatments haven't been tested. But, then again, neither have many of the mainstream treatments. It just feels like a mindset, instead of a genuine exploration of what's working and what's not.
    Well I would say surgery is different in at least four respects...

    1. We have "established" procedures let's call them as opposed to "experimental" procedures. I don't know how an experimental surgery crosses over into established... maybe you know. But I think it is happening with VBS for example.

    2. With surgery, there is a real result, one way or the other, in real time. This is a distinct advantage over something like bracing where you have to run the experiment out for years and then you may just be measuring which confounders crept in at that point. Now of course the long term with the newer instrumentation is unknown but I think we know enough from the problems with the older instrumentation, from the folks who never availed themselves of surgery, and also from the older folks who do now avail themselves that it is at least promising and I would say very promising.

    3. Is there any case controlled study on setting broken arm bones? Now I realize this is not a perfect comparison for spinal fusion but let's see where this goes. Surgery, yielding immediate results, can amass huge amounts of empirical data. Now the only way to evaluate that is through long-term studies (a few decades versus a few years for bracing) versus non-surgical cases and again you are looking at confounders possibly taking over. It's hard to study but there is way more definitive data one way or the other with surgery and you have it in real time.

    4. Present-day spinal surgery didn't appear out of a vacuum. There is a bunch of data on how to do surgery in general and there is a fair amount known on orthopedic surgery in particular, albeit mainly empirical. It is a process of perfecting the previous result and they are in the nth iteration of that. None of that can be said of bracing.

    Then again, maybe I'm just feeling contrary
    If we can include devil's advocate in "contrary," that is always in order as is always trying to be able to argue the other side of any argument. And by argument I mean an actual argument with two real sides and not things like science versus religion.

    Oh and a motion to adjourn is ALWAYS in order. I learned that in Total Quality Management which they make the research folks go through also.
    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
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,797
    I didn't move the thread to the Research forums, but I did move it to the Parents forum. If anyone notices posts in the kids forum that are started by adults, I would appreciate having my attention drawn to it.

    Thanks.

  13. #43
    Join Date
    Mar 2009
    Posts
    1,090
    Quote Originally Posted by Pooka1 View Post
    That post really should be a sticky at the top of the bracing forum.
    The sticky note that is needed at the top of the bracing forum is a warning note to parents that by allowing their children to read this forum, their children will be under continuous assault by anti-bracing proponents...and their child's treatment could be seriously jeopardized.

  14. #44
    Join Date
    Dec 2008
    Posts
    494
    BalletMom, You make a valid point, the last thing I want to do is dishearten any child who is wearing a brace. As you point out, if I were a parent of a braced child, I wouldn’t want them to read something that could be misinterpreted and give them reason to be non-compliant or discourage them.
    But, thinking back a year ago when my daughter was first diagnosed, I would have appreciated the chance to read a thoughtful discussion on the topic of bracing.
    I engaged folks here in such a discussion. I'm sure it wasnt the first. If you look at some of my early posts, you’ll see that I shared your views on Braist being ethically questionable and I looked hard at all the bracing data I could find; sparring with Sharon all the way. She didn’t just wear me down, she helped me realize that we just don’t know the answers. I respect the fact that you looked at the same data and have a different opinion on some issues.

    Do you see value in exploring these issues in a public forum?
    Do you (or anyone else) have suggestions for how to openly explore these issues yet not discourage a kid who happens to read it?

    Maybe the issue is rehashed too much and CD should just move on. When push comes to shove, there is little I can offer here except participation in a discussion like this.

    Mamandcrm, you’re right, the thread was hijacked from its original intent. Sorry about my role in that. Maybe Linda (as if she doesn’t have enough to do) could bisect the thread and figure out a way to salvage the original intent.

  15. #45
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,797
    Quote Originally Posted by concerned dad View Post
    Maybe Linda (as if she doesn’t have enough to do) could bisect the thread and figure out a way to salvage the original intent.
    As far as I know, there's no way to do that. The thread shouldn't have been in the kid's forum to begin with as far as I'm concerned.

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •