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Thread: How tight should a night time brace be?

  1. #196
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    After some searching I have found the Boachie interview in question.

    This:

    Quote Originally Posted by Pooka1 View Post
    Well Boachie seems to have some idea for fusions ending at T12 or L1... he seems to think it is one-stop shopping for surgery as does our surgeon. And they go on record..
    does not equal this, from the Boachie interview in question:

    But if you fuse them to L1 or T12, they can do very well for the rest of their lives, provided the remaining lumbar spine is properly aligned and has not shifted."
    The bolded quote from your posts reflects a kind of assurance about outcome that I simply do not see in Boachie's far more nuanced stance.

    The nuancing becomes even more clear when you include the previous sentence - the case he is comparing these kids to:

    "If you fuse a 13-year-old to L4, 20 to 25 years later, at the most, he or she is going to have problems at L4-5 and L5-S1 levels."
    So, emphasis mine, here is Boachie's comparison: if you do one thing the child "is going to have problems," and if you do the other thing "they can do very well . . . provided."

    So, I don't have any argument with Boachie's statemnt - I think that's a fair comparison, although I actually didn't realize the picture for lumbar curves was quite so grim. "They are going to have problems 20 to 25 years later" - that's far more black and white then I'd imagined. But, that kids whose curves end above that *can* do fine (i.e., that they're not guaranteed to have problems) "provided" is an entirely reasonable and nuanced statement.

    I'm glad I took the time to look that up. The "one-stop shopping" thing from a surgeon was sort of going down the wrong way - they're optimistic, but they're mostly fairly nuanced in their optimism.

    [Note - 12/29 - went back and added a note correcting Boachie's quote to all previous posts of mine on this topic.]
    Last edited by hdugger; 12-29-2013 at 04:28 PM.

  2. #197
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    I haven't seen the entire interview, but from these quotes it sounds as though he is saying that the lower the fusion goes, the more likely it is that problems could arise down the road, particularly when one is fused to L-4, which I guess is no surprise. I wonder how patients with single T curves fared.

    Also, I have seen many times where 2 surgeons differ on where to stop the fusion. We know the benefit of fusing the fewest possible levels. I can't recall what the argument is on the other side - is it the hope that the spine will not continue to curve below the fusion?
    mariaf305@yahoo.com
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    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

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  3. #198
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    Quote Originally Posted by mariaf View Post
    I haven't seen the entire interview
    Sorry, I should have included the link:

    http://www.hss.edu/professional-cond...l-stenosis.asp

    It's really focused on adult surgery and just touches on kids, but the detail on adult surgery is fascinating. I've been paying a lot of attention to Boachie because I'm seen some terrific results from him with Kyphosis patients (who are notoriously hard to balance). At the moment, he'd be my top choice for my son's hard-to-balance spine, should it come to that. This article just increased my respect for him - it's really detailed and fascinating.

    Quote Originally Posted by mariaf View Post
    but from these quotes it sounds as though he is saying that the lower the fusion goes, the more likely it is that problems could arise down the road
    I'm actually surprised by how grim his prognosis is for the lowest of these fusions. He's not saying that they'll need surgery, he's not saying they'll be in chronic pain, but "they'll have problems" is not really what you want to hear. Yes, he seems to think that, if you end the fusion higher, they may not have problems.

  4. #199
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    I've been looking around for good summaries of long-term results and ran across this article:

    http://www.ncbi.nlm.nih.gov/pubmed/21173621

    This is not meant in any way to replace an expert opinion or to suggest that the non-medical reasons for doing surgery aren't overwhelming, and I can't see the whole article so I don't know exactly what it's based on.

    Those caveats aside, it's recent and in a mainstream scientific journal so I assume it's not totally off the wall. Anyway, the abstract itself:

    "Adolescent idiopathic scoliosis: 5-year to 20-year evidence-based surgical results.
    Abstract
    Surgical intervention for adolescent idiopathic scoliosis (AIS) should be proven to alter the natural history without introducing iatrogenic complications. The risks of surgery should be substantiated by a body of scientific research, which should show a clear superiority of surgery over observation, both in the short term and the long term. The purpose of this review was to conduct a systematic search of the literature to critically evaluate the scientific evidence on the long-term outcomes and complications of surgical intervention for AIS. Our search identified 39 distinct patient populations with a minimum average follow-up of 5 years. No long-term, prospective controlled studies exist to support the hypothesis that surgical intervention for AIS is superior to natural history. Although surgery reliably arrests the progression of deformity, achieves permanent correction, and improves appearance, there is no medical necessity for surgery based on the current body of literature. However, the surgeon must not underestimate the psychological indication that occurs when a patient is no longer able to cope with the deformity."

  5. #200
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    Quote Originally Posted by hdugger View Post
    No long-term, prospective controlled studies exist to support the hypothesis that surgical intervention for AIS is superior to natural history. Although surgery reliably arrests the progression of deformity, achieves permanent correction, and improves appearance, there is no medical necessity for surgery based on the current body of literature. However, the surgeon must not underestimate the psychological indication that occurs when a patient is no longer able to cope with the deformity."
    Thanks for sharing all of this very interesting information.

    So is the writer then saying that there is no medical reason to have surgery other than the patient's inability to cope with the deformity from a psychological standpoint? I just want to make sure I am understanding correctly.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  6. #201
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    Not statistically proven.. or in some deductive way is what I understand.

  7. #202
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    Quote Originally Posted by mariaf View Post
    So is the writer then saying that there is no medical reason to have surgery other than the patient's inability to cope with the deformity from a psychological standpoint? I just want to make sure I am understanding correctly.
    I'm reading it that the short- and long-term medical risks are not worth the short- and long-term medical benefits.

    I'm not sure that I agree with that, and I can't see [literally cannot see, not that I can't make sense of it] how they've reached their conclusion. I'd like to see how they're figuring that out. I know that in other lifetime studies, like Dr. Mehta's, patients with no surgery and large curves didn't do as well as those who had been corrected. So, I can't really evaluate this research in light of other things I've read.
    Last edited by hdugger; 12-17-2013 at 11:20 AM.

  8. #203
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    And, again, 20 years is not long enough to make a definitive analysis. These kids are only in their 30s in 20 years.

    What you'd need to do is look at kids with similar curves at, say, 13 and then look at those who were fused at 13 vs. those fused later or not at all. What do they look like at 40 or 50?

    Beyond that, it doesn't matter, because you can have scoliosis past 60 even if you never had it as a kid. But following up to 40 or 50 and comparing to those who aren't fused matters.

  9. #204
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    Quote Originally Posted by hdugger View Post

    No long-term, prospective controlled studies exist to support the hypothesis that surgical intervention for AIS is superior to natural history.
    I hope that if sometime it exists, they not only compare iatrogenic complications versus consequences of not having surgery and not doing anything (natural history?) It would be necessary to compare also with people doing something as PT. May they be sure it would be the same someone needing to lift weights in his work and don’t doing nothing else than other teaching yoga or Qui Gong?
    What would they do with cases living in pain after surgery? In the still now commented case of the millionaire dying because pain, someone may be sure they were iatrogenic complications the cause, or the same would have occurred living the kind of life he had without having surgery? I have read many times people saying to the Dr, years after the surgery that they continue with pain. After seeing the last Rx, Rmi.. the Dr. said them something as ‘not problem in any screw or road.. it’s all ok. I’ll derive you to a psychologist, good luck!
    Last edited by flerc; 12-22-2013 at 12:51 PM.

  10. #205
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    Quote Originally Posted by hdugger View Post
    What you'd need to do is look at kids with similar curves at, say, 13 and then look at those who were fused at 13 vs. those fused later or not at all.
    Yes, I would think that would be the most accurate comparison (fused early vs. fused late or not at all) with all other factors being equal.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  11. #206
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    But ‘fused late’ and ‘not at all’ should not to be considered as belonging to the same group. It might to be in any case 4 different studies.

  12. #207
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    Quote Originally Posted by hdugger View Post
    Surgical intervention for adolescent idiopathic scoliosis (AIS) should be proven to alter the natural history without introducing iatrogenic complications. The risks of surgery should be substantiated by a body of scientific research, which should show a clear superiority of surgery over observation, both in the short term and the long term.
    Certainly is already proved there are iatrogenic effects: lost of flexibility and the derived complications.
    I think parents uses to believe the only risk is because the possibility of bad practice. They use to not think in other kind of not desired effects, so they are very sure that a very good surgeon in an excellent hospital is almost a guarantee of a successful surgery and then a guarantee of a normal life. It would be fine this study will also show the percentage of bad practice in the failed surgery cases, if it would be something possible to do of course. Probably parents be aware of other not desired effects probably present even in the most successful surgery that may be done.

    Quote Originally Posted by hdugger View Post
    However, the surgeon must not underestimate the psychological indication that occurs when a patient is no longer able to cope with the deformity."
    They also must not underestimate the psychological damage that may occur when a patient is no longer able to cope with the limitations of a rigid spine.

  13. #208
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    I know we talked, before the BrAIST study came out, about how a non-effect in that study might keep insurance companies from paying for braces. I'm guessing that's off the table now.

    But, insurance companies have every reason to want to try and cut their costs on what is likely the most expensive elective surgery available. Could they cut them on the (prophylactic) teen patients? I think it's possible.

    The problem with scoliosis is that the main damage it causes (cosmetic and pain) is very misunderstood and under-emphasized in medicine. If it's "just" cosmetic or "just" pain that patients are avoiding, the insurance companies might be willing to take the risk. Also, we haven't really nailed down that early surgery does decrease pain later on - certainly not for lumbar patients, and not definitive for other patients. So, they may be thinking that it's a lot of money to throw at the problem when the results are still so unknown, and the risk is (rarely) medical.

    It may be that the insurance companies are thinking of nothing of the sort, but the study I quoted got me wondering. Maybe they're thinking of holding off on surgery until patients actually are in pain - at that point, it would be easier to justify the cost, since you're treating a medical problem and not just averting it.

  14. #209
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    Nalina brace update

    Just a quick note to inform you of the progress on my daughters brace.

    We went in about a week ago and had the ortho do some tweaking on her brace. She heated it up and made some dimples(outward) in it to accommodate
    Nalina's ribs, and ground off a bit down at her hip bones.

    It fits much better now and even though it is not like wearing kid gloves she is OK with it and sleeps well with it too.
    It still makes me cringe when I have to tighten it up to the marks but she says its not too bad and falls asleep quickly.

    I know some people dont agree with the bracing idea but as I've said before we will try everything possible before surgery, so we will keep up the exercise, TR and night time brace and hope that one or all of them work.

  15. #210
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    Thanks for the update. Glad the brace fits better now. I really think your daughter will get used to it relatively quickly just like my daughter did.

    And at 38*, if it goes up just 3 more degrees (which is also the margin of error), that is outside the bracing protocol anyway. This may be a moot point.

    Good luck.
    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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