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Thread: How tight should a night time brace be?

  1. #31
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    Quote Originally Posted by Pooka1 View Post
    The other issue is that there is some agreement that 30* or less at maturity is protective against future progression to surgical range. Within the range of 30* to 40*, I think there is an ethical issue with 23/7 hard bracing especially since it could be that braces only delay surgery in the subset of kids who were apparently successful with bracing at the point of maturity and who didn't wear a brace needlessly.
    Less than 30 is unlikely to progress in maturity, over 50 is likely to progress. 30 to 50 falls somewhere between the two - they could be fine for life, or they might run into problems down the road. So, the cutoff is not 30 degrees, it is 50 degrees.

    I'm going to parse through the sentence on bracing because it seems suggests things which aren't in keeping with the research:

    "an ethical issue . . . since it could be that braces only delay surgery" - well, it *could* be that braces only delay surgery. I'm not aware of any research that shows that, but I guess it could be. See my previous post - in any long term study I've seen, braced and surgical kids have about the same level of resurgery, pain, etc. So, not to say that what you're proposing isn't so, but you'd need to show me some evidence of its truth.

    "in the subset of kids who were apparently successful with bracing" - from the research, the successful subset is pretty substantial for those kids wearing a brace 23/7. Only 7 or 8% of them go on to have surgery by maturity - 93% of them avoid it. That's more than a subset - I'd call it an overwhelming majority.

    "who didn't wear a brace needlessly" - see the two sentences above. 93% avoiding surgery by maturity, and most of those then dropped into about the same risk pool of future surgery as adults as the kids who had surgery, at least according to any long term study I've seen.

    Is it better to hit 18 with a 32 degree curve in an unfused spine vs. 15 degree with a fused spine? Beats me, but I haven't seen anything which suggests that one is greatly preferable to the other in the long run. Until I see that, avoiding the danger of the initial surgery would tip the scales towards bracing, IMO, and apparently in the opinion of all those experts who are choosing not to do surgery until the child hits nearer to 50 degrees.

  2. #32
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    Of that 93%, at least half wore the brace needlessly. And we still don't know their final curve measurements. A 49* cure was a "success" in the BrAIST study. The final curve measurements were conspicuous by their absence in the first BrAIST article on the results. Hopefully they will publish these measurement soon so we know what to make of the published percentages. Until then, the 93% is uninterpretable to folks who understand this game.

    ALso, there is no long term. Perhaps it is this subset who goes on to progress with bracing only delaying surgery.

    The people who are in no danger of having to wear a brace tend to be the most cavalier about it as we see in these posts. They also tend to not acknowledge the ethical issues. These are some of the people who would brace with a 1% chance of success or a 1 in ten thousand chance or even a one in a million chance.

    It's important to advocate for children.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
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    "We are all African."

  3. #33
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    Dr. Hey has seen "countless" cases of progression in "stable" scoliosis

    http://drlloydhey.blogspot.com/2012/08/yesterdays-adolescent-idiopathic.html

    I shared with him that the curve could remain stable, but due to the asymmetric loading of his lower lumbar discs, that there was a possibility that the lower curve could collapse, and lead to a painful degenerative scoliosis that could even result in spinal stenosis. I've seen countless cases of patients in their late 20's, 30's, 40's, 50's, 60's and beyond who were told their curve was "stable" and they were "done growing" as a teenager finishing off treatment for adolescent scoliosis, only to find out a few or many years later that the curve had begun to progress again. Logan is extremely bright, and seemed to get the long-term choice he faced, given the possibility of realigning his spine now when he is younger, and possibly be able to save the bottom 2 or 3 discs for a lifetime, while also enjoying a better posture.
    This does not seem like the exception any more. When most kids who are treated "successfully" with bracing are in the range of 30* to <50** at skeletal maturity, and anything <30* is not thought to be protective against future progression, then that would account for why Dr. Hey sees "countless cases" of progression in folks who are subsurgical at maturity. We may not need BrAIST to conclude certain realities about the efficacy of bracing. The clinics might already have the data.

    This paradigm seems to need revisiting.
    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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    That link doesn't seem to work. Here is the blog post...

    http://drlloydhey.blogspot.com/2012_08_01_archive.html

    Quote Originally Posted by Pooka1 View Post
    http://drlloydhey.blogspot.com/2012/08/yesterdays-adolescent-idiopathic.html



    This does not seem like the exception any more. When most kids who are treated "successfully" with bracing are in the range of 30* to <50** at skeletal maturity, and anything <30* is not thought to be protective against future progression, then that would account for why Dr. Hey sees "countless cases" of progression in folks who are subsurgical at maturity. We may not need BrAIST to conclude certain realities about the efficacy of bracing. The clinics might already have the data.

    This paradigm seems to need revisiting.
    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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    It certainly seems like you can win the battle and lose the war in this game. Life is very unfair.
    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
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    Quote Originally Posted by Pooka1 View Post
    . . .
    We've seen lots of long term studies on bracing. None that I've ever seen shows a larger number of surgeries in adult patients who were braced as kids. Yes, it does happen, but it's not the expected outcome.

    Quote Originally Posted by Pooka1 View Post
    The people who are in no danger of having to wear a brace tend to be the most cavalier about it as we see in these posts. They also tend to not acknowledge the ethical issues. These are some of the people who would brace with a 1% chance of success or a 1 in ten thousand chance or even a one in a million chance.
    You're moving away from facts and into personal assignations. I've no interest in that. I am simply quoting research. You can like the research or not, but my bringing facts into the discussion isn't "caviler". You raised a number of concerns that didn't seem to be supported by the research, and I responded by quoting the research. Take it, leave it, engage with the facts. But if you want to start accusing parents of not caring about children because you don't like the facts they're quoting, there's no point in continuing the discussion.

  7. #37
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    Quote Originally Posted by Pooka1 View Post
    These are some of the people who would brace with a 1% chance of success or a 1 in ten thousand chance or even a one in a million chance..
    These numbers are just puzzling to me. The chance of success, with 13 hours a day of bracing, is 93%. Even at 7 hours a day it's 75%. I have no idea where the 1%, .01%, .001% chance of success numbers are coming from, but they have nothing to do with the current research that I'm aware of.

  8. #38
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    This information is very interesting. It gives me some hope since my daughter is fine with wearing the night time brace 10 hours or so a night.
    We put the girls to bed before 9pm every night and she sleeps until about 6:30 or 7am. Maybe there will be some positive results for her.....I hope

    But back to my original question, How tight should this thing be.

    As I reported in the original post the tech removed some material from the brace and moved the strap attachment points back away from the center split in the brace about 1 inch.
    But she left the marks on the straps in the same place so in effect the target adjustment is now about 1 inch tighter than before.

    So the first few nights I started it just snug, and worked our way up to the new marks. And that was OK for a couple nights.
    But in the last couple days I cant even get it within about 1/2 inch of the marks. I am pretty strong but I can't really even get it to the mark.

    Nalina(my daughter) has been eating like a horse for the last couple weeks, could it be she went through a growth spurt and has grown that much?
    She is a thin kid, 60lbs and now recently is 62lbs. could that be why I cant get it to the marks anymore?

    She just came down stairs tonite and was kind of crying and said it feels like a needle was poking her at her lower rib cage. I let the straps out just a little
    and she was OK with it and went back to sleep.

    I guess a trip back to the brace maker is in order but any ideas on this would be appreciated.

    thanks

  9. #39
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    Quote Originally Posted by hdugger View Post
    You're moving away from facts and into personal assignations.
    You are throwing naked, unqualified numbers out there that can only deliberately confuse the situation. Here are things you continually omit:

    Half of that 93% wore the brace needlessly.
    There were 29 kids in that quartile. So 14 wore the brace needlessly.
    That then mean that 84% of the other half (15 kids) were apparently helped by the brace at least until the point of maturity. That's 12.6 call it 13 kids.
    2 wore the brace for long periods of time and still failed.

    So bracing didn't help 16 kids and appeared to help 13, at least in the short term in that 93% "success" group.

    This is why that one criticism was that they didn't have a large enough randomized group.

    But the biggest question hanging over this is what were the final curve measurements when a 49* was a success? I am very confident they will publish these numbers in the next publication. Until then, just throwing that 93% out there to people who may not be up to speed on this is misleading.

    Do you consider the kids who ended up north of 40* "successful"? What about north of 45*?
    Last edited by Pooka1; 12-09-2013 at 07:21 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 FAHSAI View Post
    She just came down stairs tonite and was kind of crying and said it feels like a needle was poking her at her lower rib cage. I let the straps out just a little
    and she was OK with it and went back to sleep.
    I hope Gayle (Leahdragonfly) responds to this. Her daughter developed some kind of benign callous on her rib from the brace if I recalled correctly. Maybe her daughter stated how the brace was hitting her there. Maybe that means the brace didn't fit as opposed to being too tight. I have no clue.

    I would ask the surgeon first then the orthotist second.
    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."

  11. #41
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    rib pain under brace

    Hi,

    my daughter did have this same type of complaint on her lower rib and did end up developing a bone callous of sorts there...it was a painful, hard lump that only really showed when she put her arms up. But it took several months for the lump to show up, and she consistently complained about the area hurting prior to that.

    It is possible in my mind that a localized irritation/excessive pressure point exists there. First step would be to remove the brace entirely and look at her skin in that area--is it red? If so, the brace is rubbing or pushing too hard here. Also, is she wearing a good and well-fitting brace shirt underneath? These help a lot with improved comfort for the skin.

    I don't think a 2 lb weight gain would cause pain in such a specific area. The usual feeling of the brace being overall too tight is they feel like their ribs and stomach are being crushed, and that they can't take a deep breath. It is a different complaint than a localized area causing pain. The orthotist can sort it out for you.

    I would definitely ask the orthotist to look at it as soon as possible. They are the experts on fitting the brace. The orthopedists seem to have little to no interest in seeing the child actually in the brace, as they leave that to the orthotist. The orthopedists seem most interested in x-rays and will want to see one in the brace.

    Two words of advice about bracing: 1. please go back to the orthotist as often as necessary to get the brace as comfortable as possible. Don't ignore complaints about one specific area of the brace feeling uncomfortable or not right. Get it looked at right away. 2. Your daughter is the only one who can say whether or not the brace is comfortable. Even when they complain about not liking the brace in general, they know when one specific area is not right, and it is your job as her parent to listen and get it looked at.

    I will share the following experience with my daughter's brace because I did not listen to her, and I still feel horrible about it to this day. We were driving home from visiting grandparents, a 3 hour drive. Leah had refused to wear her brace during the visit, so I told her she would wear it home in the car no matter what. At this point, even though she was only 6, we were having epic battles about her wearing the brace! She is a very stubborn kid. So I got her into the brace and we started driving home. 30 minutes up the freeway she starting complaining about the brace, and I told her too bad. I thought she was just complaining to complain. The complaints got worse until she was sobbing hysterically saying it hurt terribly, so I finally reached a rest stop we could pull into. I took off the brace and apparently when we put it on, it had pushed a deep vertical crease into her skin up in between the edges of the brace while the brace was tightened, and the fold was being painfully crushed and rubbed under the brace. It was cherry red and angry, and I felt like the worst mom in the entire world. The was the last time I did not listen to her about the brace hurting!

    Best of luck--these early weeks of bracing are the worst. Things do settle down some after all the necessary adjustments are made to the brace, and the family falls into a routine that includes the brace. You and your daughter will get there.

    p.s. I sent you a private message, it is in your notifications section.
    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

  12. #42
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    Gayle, that was some pretty spot on advise!

    The other thing is you can ask the surgeon if you can use some OTC pain killers during the break in period. That helped my kid.
    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 hdugger View Post
    These numbers are just puzzling to me. The chance of success, with 13 hours a day of bracing, is 93%. Even at 7 hours a day it's 75%.
    They are puzzling to you because you are not representing them correctly for various reasons. In addition to the other points i made, those numbers you list are averages. The medians should have been presented also for reasons we previously discussed. There is some chance that 93% would be lower if they used medians and the data weren't normally distributed.

    And half of that 93% "success" wore the brace needlessly. So less than half were apparently helped by the brace at least in the short term. You throw the "93%" out there like it means that the brace kept most of the (mere) 29(!) children below 50*. Not the case. Misleading in the extreme.

    This is why your continually throwing out that 93% without qualifying it can only mislead.
    Last edited by Pooka1; 12-09-2013 at 10:12 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."

  14. #44
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    Quote Originally Posted by Pooka1 View Post
    There were 29 kids in that quartile. So 14 wore the brace needlessly.
    That then mean that 84% of the other half (15 kids) were apparently helped by the brace at least until the point of maturity. That's 12.6 call it 13 kids.
    2 wore the brace for long periods of time and still failed.
    Wow! Just only 2 kids of those needing something to stop progression failed and 13 were successful cases because long use in brace! This is what statistics would be showing!
    Of course statistics may only ‘show’, not demonstrate any fact and more significant is what is showing when greater is the number of cases of the sample. But in this context, talking about a 50% of brace effectiveness, 13 in 15 is of course far to be insignificant.

    Brace effectiveness is now a statistic fact, it has not sense to continue discussing about it. Parents not knowing enough about Mats should not to allow that claims of people here hating braces confuse them. Show that last Braist study to someone knowing enough and ask them if is not enough significant what that study showed.

    About chances to progression after maturity because ending close 50°, I cannot imagine a parent so much worry thinking the curve may reach 60°, 70° ,90° (as a case I know) or more before maturity, refusing to giving her son a chance with brace because that reason. Specially thinking there is not also guarantees to have not serious back problems after maturity with surgery.

  15. #45
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    Quote Originally Posted by Pooka1 View Post
    things you continually omit:
    I've discussed all of the major points in the thread specifically about the study, and listed them in this thread as caveats. But all of these numbers have nuances, and all summaries are going to miss those nuances. You do it yourself when you quote the 50% overbracing.

    Based on an endpoint of 50 degrees/surgery by maturity, 50% of kids prescribed but not wearing a brace won't hit that target. But, no one here thinks that 50 degrees is the target, do they? Isn't that one of your big criticisms with the study, that it has the non-protective 50 degrees as an endpoint? You mention that 30 degrees should be the target, and I have a kind of indeterminate "as small as possible" target.

    So, given that, what do we know about overbracing? Take a sample (made up) kid in the study. If they didn't brace, they would have hit 40 degrees. Not enough to need surgery as a kid, but putting them at greater risk of surgery as an adult. If they braced at 25 degrees, they stay within 5 degrees of that at maturity and don't progress as an adult. Is that kid overbraced? She would be, in this study, but is that what you think? That was my beef with the study from the planning stage - it simply wasn't designed to pick up that kind of information, and, as someone who thinks keeping the curve as small as possible is the goal, it didn't address my concerns by design.

    I'm not arguing the 50% overbracing number - yes, that's the result of the study and you can quote it without fear that I'll call you caviler for missing that poor unbraced kid who went on to surgery. But, there's lots of nuances in all of these numbers.

    Quote Originally Posted by Pooka1 View Post
    But the biggest question hanging over this is what were the final curve measurements
    I've addressed that repeatedly - that was the concern you've raised that I've been specifically addressing in this series of posts.

    This study has only one end point - 50 degrees - but it's not the only bracing study that's ever been done. In general, in all of the long term bracing studies that I've seen, "successfully" braced kids progress only a small amount (something like 5 degrees on average) before maturity while in brace. After maturity, braced kids have about the same risk of pain, surgery, etc. as kids who had surgery as kids. So, the bracing has dropped them into the same risk level as a kid who went through surgery.

    While it's certainly possible that this study has some completely different result in it's details with every single one of the braced kids ending up at 49 degrees and all needing surgery immediately after the study ends, that certainly isn't what I'd expect. I'd expect the results, in detail, to look pretty much like every other bracing study, in detail.

    I'm trying to stay within the bounds of the research and quote the figures that are available. Where the figures are not available, I'm relying on the body of research to inform my estimates. If you have a reason, based on the research, to suspect that the results will look as you suggest, then quote that research and we can look at it together. Otherwise, I feel like I'm arguing against a chimera of "successfully braced kids in this study are at 49 degrees" and "bracing only delays surgery."

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