Page 4 of 22 FirstFirst ... 2345614 ... LastLast
Results 46 to 60 of 320

Thread: How tight should a night time brace be?

  1. #46
    Join Date
    Aug 2009
    Posts
    1,164
    Quote Originally Posted by Pooka1 View Post
    They are puzzling to you . . .
    They're puzzling because I can't figure out where you're getting your number from. Where are the studies you're quoting that show a 1%, .01%, or .0001% chance of bracing succeeding?

    If you don't have such a study, then I'm completely flummoxed why you're quoting these numbers in this discussion. How do we rationally discuss the various benefits and risks of bracing and surgery if you're going to pull these "so extreme as to be inflammatory" numbers out of the air?

    Is there some reason you're making up numbers instead of just using the ones suggested by the research? I'm trying to stick to the research and 93% successful is the number they quote. If you want to nuance it with the overbraced numbers, that's fine. But these made up number aren't helping to clarify anything.

  2. #47
    Join Date
    Aug 2009
    Posts
    1,164
    oops, weekend over and I think I made all the points I was interested in adding to the general discussion about bracing.

    FAHSAI, very best of luck with your daughter. I know the initial period after diagnosing is tough, but as you read about kids with similar diagnoses on this forum getting through the various treatments and then just getting on with their lives, it makes it easier to cope. You can't really go wrong, no matter what you choose to do. The caution about bracing is that you don't want to overpromise (sometimes it doesn't work) and you don't want to be so bound to it that you ignore your child's feelings. Bracing is tough, and the results aren't so positive that it's worth forcing a kid to wear one. It doesn't sound like that the case here - it sounds like your daughter is handling the brace OK - but I think that's the concern being raised by parents about bracing, so it's worth just being aware of it.

    Torso rotation is interesting, and has seen some positive results. Likewise side-shift (you can google it with Mehta and see if the research comes up). There are several places where they're combining these kinds of exercise with bracing with good results. And they're cheap enough and simple enough that it's probably worth trying them out if she's interested.

    If she turns out to need surgery in the long term, those kids do OK. And the newer fusionless surgery has been very promising in these young kids.

  3. #48
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    Quote Originally Posted by hdugger View Post
    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.
    What is the evidence for this? How do you know a single kid fits this profile?
    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. #49
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    Quote Originally Posted by hdugger View Post
    oops,
    Are you even being serious here?
    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. #50
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    Quote Originally Posted by flerc View Post
    Wow! Just only 2 kids of those needing something to stop progression failed and 13 were successful cases because long use in brace!
    And about half were braced needlessly.

    Now here's the bottom line... what percentage of kids were seemingly helped by the brace (subtracting the kids who wore it needlessly and the kids who failed) at least in the short run and considering <50* is a "success"?

    Is it more or less than half the kids?

    Now what percentage were held between 40* and 50*? Are those successes? If not, then those fall out also.

    Then you use the median (if the data are not normally distributed) and even more might fall out.

    You do the math.
    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. #51
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    In another active thread on this forum we have a child who is done growing (if closed tri-radiate cartilage means done growing) and she is a 48*. She was compliant with bracing and so would have been in the "93% success" group. She would be counted as a "success" in BrAIST. She is also being referred to surgery.
    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. #52
    Join Date
    Aug 2009
    Posts
    1,164
    Quote Originally Posted by Pooka1 View Post
    (if closed tri-radiate cartilage means done growing)
    I don't believe so. It closes in the middle of the peak height velocity.

  8. #53
    Join Date
    Mar 2010
    Posts
    2,004
    Quote Originally Posted by hdugger View Post
    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."
    In fact she wants to convince parents that last Braist study didn’t show really a considerable high brace effectiveness until maturity, that more data is needed before believing in such kind of crazy conclusion and anyway surgery is inevitable in cases where it would be needed if nothing is done.
    Nothing new.. just only doing her work here. This forum is really DANGEROUS!.

  9. #54
    Join Date
    Mar 2010
    Posts
    2,004
    Originally Posted by flerc
    Wow! Just only 2 kids of those needing something to stop progression failed and 13 were successful cases because long use in brace!

    Quote Originally Posted by Pooka1 View Post
    And about half were braced needlessly.

    Now here's the bottom line... what percentage of kids were seemingly helped by the brace (subtracting the kids who wore it needlessly and the kids who failed) at least in the short run and considering <50* is a "success"?

    Is it more or less than half the kids?

    Now what percentage were held between 40* and 50*? Are those successes? If not, then those fall out also.

    Then you use the median (if the data are not normally distributed) and even more might fall out.

    You do the math.
    I was only commenting what you said: ‘Just only 2 kids of those needing something to stop progression and with long use in brace failed and 13 were successful cases’. Or did you say something different? Or do you think it was a wrong comment? Do you believe in some X factor much stronger than time in brace or brace itself? Which? I asked you that time ago and you seemed to become to do a demonstration about it. Did you finish it?
    Anyway give me the number of kids and I’ll tell you what you are asking me. More simple, suppose is under the half. And what if it would be the case?

    About the percentage between 40 and 50, if all of them would be fused now or would have been before using brace, which would be the percentage of success, that is, not unusual or infrequent back problems until end of life? When you say me that I’ll may have more of the information needed in order to say you if they really should to be considered as successful cases or not.
    Last edited by flerc; 12-09-2013 at 03:22 PM.

  10. #55
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    Quote Originally Posted by flerc View Post
    In fact she wants to convince parents that last Braist study didn’t show really a considerable high brace effectiveness until maturity, that more data is needed before believing in such kind of crazy conclusion and anyway surgery is inevitable in cases where it would be needed if nothing is done.
    Nothing new.. just only doing her work here. This forum is really DANGEROUS!.
    Actually, what I'm trying to do is provide the background for why surgeons like Dr. Hey still do not treat bracing like chemo for cancer. If a parent were to just read your posts, we would have kids browbeaten into brace wear when more than half will not benefit for one reason or another. Maybe considerably less than half will benefit when the long term is accounted for including potential collateral damage to formerly non-structural areas of the spine.

    In the BrAIST study, most of the braces were 23 h/d type, not night-time braces as was incorrectly stated upthread. Almost by definition, NONE of the kids in night-time braces were included in the groups that were most "successful", those who wore the brace on average >17.7 hours per days (the magic 93% group). They were almost certainly excluded from the group that wore the brace >12.9 hours per day. Most kids don't sleep that long.

    So BrAIST results are almost certainly IRRELEVANT to this thread and this poster.

    Nobody cares about details, even when they are critical it seems. Rather, there is a robotic repetition of "93%" that can do nothing but mislead.
    Last edited by Pooka1; 12-09-2013 at 03:03 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."

  11. #56
    Join Date
    Aug 2009
    Posts
    1,164
    Quote Originally Posted by Pooka1 View Post
    Nobody cares about details
    I quoted the details upthread

    "* With all possible caveats (I'm not a doctor, the long term results are unknown, the research is crappy, bracing is tough) studies are routinely finding a dose-response curve for bracing. The BrAist study, wearing a nighttime brace [note: extrapolation from "at least 7 hours brace wear] cut the risk in half (from 50% progressing to 25% progressing). Upping the hours to at least 13 a day further cut the risk to 10% progressing. Raising it above that made a much smaller difference. If she's handling the bracing well, I'd at least raise this with her doctor and see what he says. I'm sure there are good reasons on the other side for sticking with a nighttime brace, but it might be worth having a discussion about it."

    No one has recommended "brow-beating" a child. Where are you getting that from?

    There simply is not a "us/them" here. It's a support forum, for heavens sake. I'm trying very hard to present all the evidence I'm aware of fairly. I'm talking about bracing more because I feel that I need to correct things from your posts. But I've strongly recommended VBS and talking to Betz, I've talked about exercise. I've addressed some of the concerns about surgery. I really do not have a horse in this race. We *all* want what's best for these kids, or we wouldn't be participating in a support forum. We're all trying to help. If you think something needs clarification, then clarify it. But these over-charged terms and phrases - "cavilier", "noboby cares about the details" "deliberately confus(ing) the situation)" "it's important to advocate for the children" "kids browbeaten" and so forth - are not bringing any clarity and they're unnecessarily divisive. There's no reason to make parents feels as if they have to choose sides in some pitched battle when they come onto a support forum looking for advice for their child. Really, who needs the extra drama - having a sick kid is plenty dramatic enough. Can we just calm it down a little?

  12. #57
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    Quote Originally Posted by hdugger View Post
    The BrAist study, wearing a nighttime brace [note: extrapolation from "at least 7 hours brace wear] cut the risk in half (from 50% progressing to 25% progressing).
    Quartiles of average wear / Treatment "success" (<50* at maturity)(N.B. I am eyeballing the percentages off the graph)

    0-6 / ~42 (~range 25 - 60)
    6.1 - 12.8 / ~73 (~range 55 - 85)
    12.9 - 17.6 / ~90 (~range 75 - 95)
    > or + 17.7 / ~93 (~range 80 - 98)

    There were 116 kids in the group so each quartile has 29. Unless there is a normal distribution, medians are the correct metric, not average. This has been pointed out by others besides me.
    Note the large ranges and the overlapping ranges. In fact all the error bars overlap sequentially. That tells you there is scatter and it is impossible to predict within large ranges of brace wear.

    What is constantly ignored is that EVERY QUARTILE contains kids who wore the brace needlessly. The quartiles are only 29 kids but all we can do is assume they all had similar numbers of kids who wore the brace needlessly. Therefore wearing the brace >6 hours moves the AVERAGE percent "success" up 31% (again with large ranges).

    For the second quartile, 31% were apparently helped by the brace at least until the point of maturity and 69% were not. And the issue of overlapping error bars (the quartiles are not that different if the ranges overlap considerably).

    That is what I would tell a child about 7 hours of brace wear (beyond all the other caveats).

    The bottom line is these numbers are ALL uninterpretable until they publish the final curve measurements which were conspicuous by their absence in the first paper considering it is critical information and it would have only added one line to one table and a few sentences or a short paragraph to the paper. And they should have shown medians or else state the data were normally distributed.

    The bottom line is that it is impossible to discuss this without all the caveats if you want to avoid misleading folks. IMPOSSIBLE. You CANNOT take it at face value. Skepticism is in order... a majority of "landmark" publications like this are impossible to reproduce for whatever reason. I will continue to comment in response to any lack of skepticism.
    Last edited by Pooka1; 12-09-2013 at 08:01 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."

  13. #58
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    By the way, I do see value in you posting what you do and me posting what I do... it is so lay people can get a healthy appreciation of the wide range of presenting the same data and how the emphasis can be completely different.
    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. #59
    Join Date
    Aug 2009
    Posts
    1,164
    Quote Originally Posted by Pooka1 View Post
    What is constantly ignored is that EVERY QUARTILE contains kids who wore the brace needlessly.
    No, not ignored. In fact, this will now be the third time I've posted, reposted, and reposted the same statement: "wearing a nighttime brace cut the risk in half (from 50% progressing to 25% progressing)." That's summary "cutting the risk in half" states what the risk is - 50% chance of progressing without brace - and how it's affected by 7 hours of bracing (cut in half to 25% progressing). This is what a risk statement is - it compares the course of disease without treatment to the course of disease with treatment.

    For the rest of your numbers, I discussed before why I summarized the risks the way I did, and why I think it's clearer to state the results the way risk is normally stated. Yes, you can write it as you have below, but it's not the standard way of stating it and I think it overly-confuses the material. There's no way to compare the way you present the risk with any other risk statement that anyone has ever seen.

    But, here's the main point. I simply cannot make sense of what you're trying to do here.

    I'll tell you how I normally approach these discussions. If a kid is doing well in brace (as this kid apparently is) I say pretty much what I said in my first post about bracing - lots of caveats, dose response, looks like it's effective, and so on. If the kid is having a terrible time in brace, I totally let off the accelerator and just tell them to pay attention to what seems to work for their kid and not beat themselves up too much. If they've already stopped bracing altogether, I tell them lots of kids do fine without bracing and surgery is safe. So, I try to offer helpful advice depending on where they are, always following their lead. My objective sense is that kids who can tolerate bracing well should do it for 13 hours a day in order to avoid surgery, but it's really a personal decision so I don't always share that objective sense with everyone I talk to. I am here because my objective sense seems to jibe with what appears to be working.

    So, that's what I'm doing. In the research section I advocate view. Up here, where people are asking for advice, I just try to provide useful info based on where they're heading. But I'm decidedly not trying to alter their course unless it seems like there's some serious problem with their doctor. If there's not, then I'm here to support them *and* support their relationship with their doctor. I am not trying to come between them and their doctor.

    I'm genuinely confused about what it is that you're doing. This is a young kid with a bracable curve who's doing OK in a brace, and who not one but two doctors have prescribed a brace for. What is it exactly that you're trying to accomplish with your participation in this discussion? Do you want this kid out of a brace, against not one but two doctor's instructions? For what purpose? Based on what evidence? If you don't want that, what is the point of undermining their prescribed protocol with a bunch of numbers that appear in no research whatsoever, along with a scattering of those rare-but-scary stories about people's lumbar spines just collapsing because they didn't have surgery soon enough? Are you actually recommending that this kid be taken out of a brace and fused at age 11?

    I really cannot make heads or tails of it. You seem very impassioned, but I honestly have no idea what it is that you're so impassioned about or what outcome it is that you're lobbying so hard for.
    Last edited by hdugger; 12-09-2013 at 08:47 PM.

  15. #60
    Join Date
    Aug 2009
    Posts
    1,164
    Ok, I'm doing that Columbo thing again. I meant to back out of the discussion this morning, but this time I really do have to go or I won't get any work done this week.

Posting Permissions

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