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Thread: Very Interesting Scoliosis Blog

  1. #61
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    Sorry if I missed this point earlier...

    ...but is there any statistically relevant poll out there of surgeons in regard to what percentage think bracing works? I just don't know how any of us would know what most surgeons think on this point unless they all answered the question (and how the question was worded). I know that my daughter's surgeon (who is the chief of the pediatric orthopedic department at a major hospital) thinks bracing works for some kids. By "works" she mostly means, holds or slows curve progession suffient to avoid surgery.

    I agree with Ballet Mom that bracing has a place. For some children, it works to hold their curve (or maybe even improve it in some cases). Those children are represented here on the forum. The difficulty is figuring out who to brace not whether to brace at all.
    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

  2. #62
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    Quote Originally Posted by mamandcrm View Post
    ...but is there any statistically relevant poll out there of surgeons in regard to what percentage think bracing works? .
    The closest poll or survey to what you are looking for that I am aware of is the Equipoise study.
    I mentioned it here

    I just reread my post. This was perhaps my first inkling of doubt about the logic of bracing my (post menarchal) daughter. She was in the Spinecor at that time.

    This is the paper
    Professional Opinion Concerning the Effectiveness of Bracing Relative to Observation in Adolescent Idiopathic Scoliosis. Dolan, Lori A. PhD *; Donnelly, Melanie J. MD +; Spratt, Kevin F. PhD +; Weinstein, Stuart L. MD *
    [Article] Journal of Pediatric Orthopaedics. 27(3):270-276, April/May 2007.

  3. #63
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    Quote Originally Posted by Ballet Mom View Post
    CD:

    ď70% of kids are unnecessarily braced. Doesnt this make you pause and think?Ē
    I would have to look at the study, I donít have time to, but Iím not sure I feel very confident thatís a true statement with the amount of conflicting opinions in this field.
    You have to remember that this Daniellson paper followed up on some of the patients that were in the last, large, SRS Bracing study. That 1995 study has been shown to be flawed. Danielsson tried to salvage what they could.

    After a mean of 16 years after maturity and at a mean age of 32 years, the advantage of early bracing versus observation in patients with AIS and a curve size of 25į to 35į was seen during adolescence and not during the time after maturity. No patients in either group, bracing from inclusion or observation as the intended treatment, underwent surgery after maturity. Six patients (7%) had a curve size exceeding 45į, 1 in the initially braced group and 5 in the initially observed group (not significant),with none exceeding 48į. Patients braced from the start had a significantly smaller curve magnitude at follow-up, but the difference between the groups was within themeasurement error. Our present results do not change the principal conclusion of the original SRS study: that well-performed brace treatment prevents curve progression during adolescence in patients with moderate AIS, while observation as the intended treatment allowed 70% of patients to escape any treatment at all and left 10% with surgical treatment and 20% with brace treatment.

  4. #64
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    ďNo. That's not how it works. If you agree to enter the study a computer randomly assigns your child to one of two groups. It has zip to do with the parent's preference. Parents with strong preferences never enter the study in the first place.Ē
    Random means random. That would mean every patient that came into a participating orthopedic docís office was placed in the study. If the patients are allowed to self-select, then itís not random to begin with. Then the possibility becomes that only, or a large percentage of, the people with a genetic basis for their scoliosis would end up in the study and not people with other types of scoliosis as most people will want to try bracing. This would make the study not applicable to the general scoliosis population and with no means to make an accurate determination of whether to brace or not. I believe there are probably multiple causes of scoliosis. It also doesnít reflect the many different attributes of the patients in the study, whether they are overweight, have a flexible spine, etc. and so makes it much too broad a resulting generalization. As scoliosis is a very complex and relatively rare condition, it appears to me that these studies just donít have the numbers to make many generalizations at all i.e.:

    ďI think you are misunderstanding the statements. I think they went as far as the data allowed. If they didn't break out the data into smaller groups it's because the data don't support doing that. The error bars are wide... they are lucky to be able to identify the two groups at allĒ.
    Iím not misunderstanding the statements at all. Thatís exactly what Iím saying. If they canít even break the study down into increments that actually help in prediction of progression for various meaningful Cobb angles, what good is it other than to make very rough and broad generalizations? Those numbers reported are absolutely useless for many of the cases out there. Certainly the results of most of these studies are not specific enough to start excluding people from certain treatments such as bracing. And I think itís crazy to keep insisting that these studies actually reflect whatís going on in any specific scoliosis case. They are simply grand generalizations by the researchers to give doctors whatever little insight they could glean from a very limited sample of patients.

    I feel like Iím talking to a stump here. Rigidly immoveable. I really donít have this much time to spend on the forum, Iím getting behind in my own work. I believe there is a surgical agenda going on in this forum by at least one person whose real identity is questionable in my mind.

    I suggest that parents walk with their feet if they are interested in trying to stop their childís curvature from progressing and are willing to support their child in the bracing process (especially if the initial curve is 35 degrees or less) and they come across an orthopedic surgeon who doesnít offer them the option of bracing. I suspect when the loss of business hits that surgeonís pocketbook perhaps theyíll change their treatment options.

    Parents do have power, and obviously bracing doesnít guarantee anyone will have success, but the scoliosis studies out there are so weak that they canít possibly apply to the general scoliosis population at this point and they have no idea who bracing will work for except within some large generalizations. And they could be harming your childís health.

    I wish everybody out there the best of luck with their childís or their own treatment. It is a very complex and difficult condition to deal with and I hope for the best for everybody.

  5. #65
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    Quote Originally Posted by Ballet Mom View Post
    Random means random. That would mean every patient that came into a participating orthopedic docís office was placed in the study.
    Breath-taking.

    So if a parent refuses do they pull out a pistol?
    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. #66
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    You are out of line Balletmom

    Balletmom,

    You seem to have forgotten that we are all entitled to our own opinions here, including Sharon. It doesn't matter what you think of her personally, name calling is offensive and immature (and not to mention, a very poor show of behavior for any of the under-18's who may be reading).

    Your post has been reported as abusive, and I hope it will be removed in keeping with the guidelines here. Please remember to play nicely if you wish to participate.

    By the way, your repeated references to those of us who have scoliosis and children with scoliosis are offensive as well. Your child could have "genetic scoliosis" too, even if you have a straight spine. I'm really not sure how you think your child's scoliosis varies from my child's or how this is relevant at all. You need to be more aware of your tone in regard to this type of comment.
    Last edited by leahdragonfly; 05-16-2009 at 04:51 PM.
    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

  7. #67
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    I don't mind her name calling but I do mind putting out ridiculous claims that folks will be enlisted in a study whether they consent to it or not just by walking through the clinic door.

    That misinformation could scare folks away from visiting an orthopedic surgeon.
    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. #68
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    Random trials

    Balletmom,

    Maybe you are unaware that ALL random trials for all types of medical conditions require full informed consent of the patient/parent, and that in ALL randomized studies the patient/parent can opt out or decline to participate in the study. This is STILL a legitimately randomized trial.

    You assume that parents who were braced themselves would reject bracing their own child. In talking with many other scoliotic parents of children with scoliosis, it is quite the opposite, the parents want to be more aggressive with treatment in order to avoid progression. You shouldn't make assumptions about things you know nothing about.

    I personally try to make decisions for my child based on scientific evidence, not just anecdote or convention. People like you who object to BrAIST because it might take away your access to bracing your child (and Celia, I know you're out there too--shame on you), let me ask you this...If bracing were shown to be entirely ineffective for scoliosis, why would you want to brace???
    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

  9. #69
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    I think Ballet Mom is thinking of consecutive series. That method of selecting a cohort is not appropriate for this study.
    It IS random in that once you agree to participate then your treatment is randomly assigned.
    Remember the study is funded by the United States National Institutes of Health, the Canadian Institute of Health Research, and the Shriners Hospitals. Pretty good pedigree. ( I dont think SHriners has an anti-bracing agenda so they can do more free surgeries.)

    Ballet Mom was pointing out a weakness in the study. There are others; it is non blinded (to the patients - pretty hard to not be aware you're in the braced cohort);
    it is not placebo controlled - yeah, sign me up for that, you'd need to wear a fake brace;
    there are probably other shortcomings also that are unavoidable.
    On the other forum a poster pointed out a very valid weakness and the study was actually changed (to include curves below 25 degrees, it now goes down to 20)
    But, I think they're giving it a good shot. God Bless the kids participating - they may help our childrens children.

  10. #70
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    Going back to the original theme of this post, this weekend I read and listened to a heartwarming story linked from Dr Hey's Scoliosis Blog. Perhaps some here may enjoy also.

    Take a listen to this NPR story, and let's all remember to thank even the members of the team who are not always directly helping at the point of care. It takes the full team, both behind the scenes and "on-stage" to make it work.

    encouraging story on npr about prayer

    I hope this post (or any it may bring) does not violate the Forum policy.

  11. #71
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    I have read this once before CD and indeed found it heartwarming. This doctor came very close to losing his leg many years ago and underwent multiple surgeries. It is what ultimately led him to his chosen career, and he never forgets to thank God for his many blessings. Prayer is an important part of his life. I have much admiration for him.

  12. #72
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    Quote Originally Posted by concerned dad View Post
    Going back to the original theme of this post, this weekend I read and listened to a heartwarming story linked from Dr Hey's Scoliosis Blog. Perhaps some here may enjoy also.

    Take a listen to this NPR story, and let's all remember to thank even the members of the team who are not always directly helping at the point of care. It takes the full team, both behind the scenes and "on-stage" to make it work.

    encouraging story on npr about prayer

    I hope this post (or any it may bring) does not violate the Forum policy.
    Wow - that was great listening CD thank you. Glad you posted this, put the link in my favorites and will be visiting it more often. Hope it didn't break any forum rules either - certainly can't imagine why it would. Heartwarming - truly.

  13. #73
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    Quote Originally Posted by concerned dad View Post
    Going back to the original theme of this post, this weekend I read and listened to a heartwarming story linked from Dr Hey's Scoliosis Blog. Perhaps some here may enjoy also.

    Take a listen to this NPR story, and let's all remember to thank even the members of the team who are not always directly helping at the point of care. It takes the full team, both behind the scenes and "on-stage" to make it work.

    encouraging story on npr about prayer

    I hope this post (or any it may bring) does not violate the Forum policy.
    I hope fluff like that doesn't violate any forum policy.

    The problem comes when folks cross the line and claim non-scientific methods are effective in non-scientific ways without presenting evidence.

    Science remains the only way of knowing anything. Prayer as a type of placebo is part of science.
    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. #74
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    I'm kind of interested in the last post in Dr. Hey's blog of May 21st, 2009. Does anyone have any comments regarding fusion surgery on a 36 degree curve? It seems crazy to me as the spine shown is really not that bad. Didn't someone say at some point that it was illegal to do fusion surgery on less than a specified number of degrees? Personnally, unless there are other physical problems in that patient, I really rather feel sorry for the person. Comments anyone?

    http://drlloydhey.blogspot.com/

  15. #75
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    Quote Originally Posted by Ballet Mom View Post
    I'm kind of interested in the last post in Dr. Hey's blog of May 21st, 2009. Does anyone have any comments regarding fusion surgery on a 36 degree curve? It seems crazy to me as the spine shown is really not that bad. Didn't someone say at some point that it was illegal to do fusion surgery on less than a specified number of degrees? Personnally, unless there are other physical problems in that patient, I really rather feel sorry for the person. Comments anyone?

    http://drlloydhey.blogspot.com/
    Yikes. That's definitely a small curve. He does state that it's "painful," which is the magic word. There's no law about how large a curve has to be before it's operable.

    Since we don't know anything beyond what's on the blog, we can't know whether it was a good or bad thing. I would hope that, if it was my child, we would have tried every non-surgical option before doing a log fusion.

    --Linda

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