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Thread: Scoliosis Specialists

  1. #31
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    Quote Originally Posted by Pooka1 View Post
    There is a clear sense now that it was wrong to do so then because the new guidelines call for controlled studies, no?
    No
    The new guidelines do not call for controlled studies.
    I just read the paper twice (I assume you mean the 2005 SRS Guidelines on Bracing Studies published in Spine)
    The guidelines call for consistent parameters for future studies (inclusion criteria, standardization of reporting outcomes, etc).
    The guidelines do not call for all future studies to be prospective (controlled)

    Quote Originally Posted by Pooka1 View Post


    possibly I'm missing something but if so, it hasn't yet been pointed out. If there was some merit to uncontrolled studies, why would the newer studies go to a controlled format?
    They are not

    Quote Originally Posted by Pooka1 View Post


    Still, science is science and orthopods now throw out those early uncontrolled studies. We know they are discarding these data because many of those studies showed high efficacy rates and yet many orthopods still don't brace as I type.
    and other orthopods do brace
    You say, Some orthopods now throw out the early studies. I dont thnk they are throwing them out. They are looking at the data in totality to make an informed decision. Different orthoods (and parents) come to different conclusions.
    I just dont want any other parent reading this to think that the existing research is "Garbage".

  2. #32
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    Apologies

    I now agree I was irrationally exuberant in my characterization of the bracing literature as "garbage."

    I took the lesson that my adviser learned to heart and have never forgotten it. I consider it my great fortune to have heard that story early on in my research career.

    I still don't see how anyone thinks an uncontrolled study can yield any meaningful results. Even many controlled studies yield false results.

    The verdict on bracing is clearly out. Hopefully it will be in eventually.
    Last edited by Pooka1; 12-21-2008 at 08:51 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 concerned dad View Post
    No
    The new guidelines do not call for controlled studies.
    I just read the paper twice (I assume you mean the 2005 SRS Guidelines on Bracing Studies published in Spine)
    The guidelines call for consistent parameters for future studies (inclusion criteria, standardization of reporting outcomes, etc).
    The guidelines do not call for all future studies to be prospective (controlled)
    I just found this abstract.

    They are only addressing study criteria, not study design. I assume they are assuming a controlled study that includes those study criteria.

    If you can find some guidelines that explicitly say control groups are not necessary, I'd like to see it. I don't think this 2005 paper on study criteria addresses it.
    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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    Study designs

    I wrote earlier that (I assume) the best way forward is one or all of the following based on seeing them in the most recent literature:

    1. randomized trials,
    2. controlled studies, and
    3. retrospective studies.

    Now as far as I know, ALL of these involve control groups. That is, randomized trials would assign folks to either a braced or watch/wait group. Controlled trials are obviously controlled. And retrospective studies I assume have a retrospectively assembled watch/wait group just as they have a retrospectively assembled brace group.

    The last of these have to be very carefully done in my opinion to avoid any unwarranted data selection/exclusion.

    Now if any of this is wrong I would appreciate being edified. This is not even close to my field and there is a high chance my conclusions are false.
    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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    Hi Pooka...

    I'm all for solid science, but when it comes to conditions/illnesses where "control" groups are made up of people who might suffer needlessly, I personally loosen my standards a bit.

    If your daughter was dying from an illness, and there was a pill that could almost certainly cure her, but the only published studies were retrospective, or not randomly controlled. Would you want your daughter to get the pill outright, or would you want her to go into a randomized controlled study and potentially be given a placebo?

    It would be great to live in a world where all research was solid, and which could be trusted. Until then, I think the best most of us can do is select medical professionals who have a lot of experience, and then trust their judgment.

    Regards,
    Linda

  6. #36
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    Quote Originally Posted by LindaRacine View Post
    Hi Pooka...

    I'm all for solid science, but when it comes to conditions/illnesses where "control" groups are made up of people who might suffer needlessly, I personally loosen my standards a bit.
    Well, if bracing is to be studied then you run the risk those braced kids are going to suffer needlessly. That's the way it works. Bracing at this point is hard to justify when surgery can stabilize most cases and in fact put some kids back in the general population on back issues for the rest of their life. That's a high bar for bracing to jump in my opinion and why I wouldn't choose it at this point. And the bar will get higher and higher as the surgical techniques get better and better. The bracing crowd has their work cut out for them.

    Quote Originally Posted by LindaRacine View Post
    If your daughter was dying from an illness, and there was a pill that could almost certainly cure her, but the only published studies were retrospective, or not randomly controlled. Would you want your daughter to get the pill outright, or would you want her to go into a randomized controlled study and potentially be given a placebo?
    But how would you know the pill could almost certainly cure the illness without studies? With such stark results, clinical trials are usually halted and the control group is given the pill. That is NOT the case with bracing AT ALL. So that analogy is completely off base here.

    There is a big problem in my opinion in this area with folks automatically assuming bracing is the present gold standard for sub-surgical Cobb angles when that conclusion sits on a thrown of questions (to borrow/change the phrase from the movie, "Elf").

    Quote Originally Posted by LindaRacine View Post
    It would be great to live in a world where all research was solid, and which could be trusted. Until then, I think the best most of us can do is select medical professionals who have a lot of experience, and then trust their judgment.
    You got that right.

    sharon
    Last edited by Pooka1; 12-23-2008 at 09:28 AM.
    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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    I dont want to put words in Sharons mouth, but I think her point was that some current research suggests that bracing MAY have similar results to not bracing at all. As that may be the case, a controlled study is ethical (and called for). I didnt recognize this at the beginning of the discussion but Sharon convinced me.

    Our discussion was about the value and merits of the existing uncontrolled studies.

    Sharon is wrong (IMO) about the current guidelines calling for controlled studies, they do not (and I will try to elaborate on this later).

    There are very very few controlled studies (where the control is Sharons definition of an unbraced group). The one that seems to be often cited is the study in Ireland where the hospital doesnt brace at all. They compared their results to hospitals that did brace. They concluded that the incidence of surgery was not statistically higher but they also concluded (and you have to read more than the abstract to get this) that their patients (unbraced) had a higher curve at the end of the study when compared to other hospitals that did brace. It is important to note that their measure was number of surgery's, not curve amplitude.

    In the paper they discuss some of the problems with their study. The one perhaps most relevant is using number of surgeries as a measure. Orthopods use different criteria for deciding when someone will have surgery. One DR may operate to correct a cosmetic deformity and another may not.

    And all of the above and everything I have written on this forum is just my opinion which may very well be incorrect and is always subject to change.

    edit - I didnt see Sharons response above before posting.

  8. #38
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    An open mind

    Concerned Dad has it.

    (To borrow the phrasing from the I can has cheezbruger site. http://icanhascheezburger.com/tag/nose/)
    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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    Quote Originally Posted by concerned dad View Post
    There are very very few controlled studies (where the control is Sharon's definition of an unbraced group).
    I would say it's the general definition for a control group; I certainly didn't invent that. There is a reason that adviser threw that student's study in the garbage can after only looking at one paragraph of the Methods section.

    And perhaps we can all agree that lack of controlled studies is precisely the problem and the reason why bracing is still mired in questions?
    Last edited by Pooka1; 12-23-2008 at 09:29 AM.
    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
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    Quote Originally Posted by concerned dad View Post
    ... Apparently some Chiro's ARE trained to treat scoliosis. SpineCor trains SOME in the use of their brace. And, in much less than 100 years, their IS evidence of that brace "successfully halting or decreasing a curve" in SOME people. ...
    Concerned dad,

    I really wouldn't consider a chiro "trained to treat scoliosis" simply because they monitor a kid in Spinecor.

    Yes, Spinecor can halt a curve in SOME people (but so can *any* brace, or NO brace, for SOME people). I've yet to see any evidence, however, that chiropractic, Spinecor, or anything short of vertebral stapling, VEPTR or fusion can decrease a curve. Vertebral tethering also shows some potential promise.

    BTW, most SRS doctors won't treat with Spinecor ... which probably has something to do with the prevalence of chiros who do.

    Quote Originally Posted by concerned dad View Post
    My daughter will be treated by an orthopedic Dr using the SpineCor ...
    It looks like y'all found a rare ortho (out of curiousity, is he SRS?) who will use Spinecor. I do sincerely hope your daughter does well with it.

    Please be sure to insist on out of brace x-rays. My largest concern with Spinecor is the false success rate all too frequently shown by strictly in-brace x-rays. Just my opinion, but x-ray protocol should be the same with Spinecor as with other (ortho condoned) braces ... 24-48 hours unbraced before films. It's really the only accurate measure of determining a curve is being held.

    Best regards,
    Pam
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op 53, Post-op < 20
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


    VIEW MY X-RAYS
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  11. #41
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    Quote Originally Posted by Pooka1 View Post
    ... But the point is that NOW folks are indeed doing controlled studies with unbraced groups. And I would certainly hope no uncontrolled study is ever published again. An uncontrolled study is the very definition of garbage science.
    Yep ... there's a huge, nationwide, CONTROLLED study going on now (Shriners Houston is just one of many participants), and there's an ever-increasing number of orthos who feel bracing, in most cases, is simply to make the *parents* feel ~something~ is being done (and, no ... this isn't true in all cases).

    Until more data is available on which curves are likely to progress, a huge piece of the puzzle is missing. Researchers are making progress, however, and I'd like nothing more to see definitive answers in my lifetime! ;-)

    Regards,
    Pam
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op 53, Post-op < 20
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


    VIEW MY X-RAYS
    EMAIL ME

  12. #42
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    Just an opinion from a parent, using a Spinecor brace with a chiro.

    Even though I opted to go the Spinecor route and do see a chiro every 3-5 months, I continue to see the orthopedic too. There is no way I would ever consider the chiropractor "trained to treat scoliosis", even though he is very knowledgable about what he does, which is fit and adjust a Spinecor brace.
    Regular visits to the orthopedic are necessary.

    While I am bracing my daughter at this time, I do realize that it may or may not work. It may or may not be controling the curve. Up to this point it is not correcting the curve. I only know this, because my ortho insisted on an out of brace xray after one year in the brace. The curve was stable at that point in the low 20's. In brace right now it is 16 degrees per ortho, 18 degrees per chiropractor.

    Up to now there has not been enough reliable, conclusive data to support bracing or not bracing with any type of brace. As parents we have to look at all the information and make the best decision we can at the time. Then be flexible enough to change our minds if the need occurs.

    Pam,
    Just a note my ortho, who didn't initially support me putting my daughter in a Spinecor, is glad that she is wearing it now and today told me several times to continue with it. I guess that as a year and a half has passed, he has seen no adverse effects from the brace, and she is tolerating it well, this has made him a little more open minded to it. He also has another patient now whose parents have opted for the Spinecor. So while he isn't prescribing it, it is not dismissing it either.

    Whether the brace is for "me" to at least feel like I am doing something, or if it is really "helping" my daughter is something I may never have completely answered, but the alternative was 6-8 years of waiting and watching, knowing that if her scoli progressed it could be relentless progression due to the type of scoli she has. Waiting and watching really isn't a viable option either.
    Emily's mom-11 1/2 years old
    28 degree scoliosis 9/04
    Chiari Malformation/SM decompressed 11/04
    17-24 degrees 11/04-6/07
    Wearing Spinecor Brace since June 07
    3/31/10- 29 degrees oob
    11/18/09 17 degrees in brace

  13. #43
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    My Ortho is also very impressed and has actually started to be trained to use Spinecor. One of the techs from Montreal was at my daughters last visit here in Ct.
    from CT, USA
    6 year old daughter diagnosed 7/06 33* T9

    Spinecor 8/06 - 8/2012
    8/06 11* 3/07 5*-8/07 8*-2/08 3*
    10/08 1* 4/09 Still holding @ 1*
    10/09 11* OOB 4/10 Negative 6*
    10/2011 Neg.11* IB 11yrs old 0 rotation
    4/2012 12* OOB 0 rotation
    8/2012 18* OOB for 2 weeks. TSLO night time
    2/2013 8* OOB 3 days TSLO nightime
    3/2014 8* Out of Brace permanently

  14. #44
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    Christine,

    Has your daughter had an out of brace xray since starting the Spinecor? Those results are amazing!
    Emily's mom-11 1/2 years old
    28 degree scoliosis 9/04
    Chiari Malformation/SM decompressed 11/04
    17-24 degrees 11/04-6/07
    Wearing Spinecor Brace since June 07
    3/31/10- 29 degrees oob
    11/18/09 17 degrees in brace

  15. #45
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    Quote Originally Posted by emarismom View Post
    Waiting and watching really isn't a viable option either.
    I agree with you that watching/waiting doesn't seem to be an option for JIS like it is for AIS. The choices are bracing or non-fusion surgery as far as I tell.

    I hope the studies looking at these surgical and bracing procedures for JIS yield up some high-quality data as soon as possible.

    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."

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