How tight should a night time brace be?

[flerc]

I just want to say that if parents are making medical decisions based on what ANY of us here of the forum say - be it you, me, Pooka or anyone else - they are doing a disservice to their children. This is simply a forum where we share ideas and experiences. Nobody should be using the views posted here on bracing, surgery, torso rotation machines, PT, or anything else as the tools by which they make their treatment decisions. They can read it and weigh it all - but they should be talking to their doctor and the medical experts in the field.

You cannot ignore how much a parent specially new in scoliosis can weight what he read in the most visited scoliosis forum of the world, if it is said by the ‘forum’s voice’ who don’t stop to write thousands of posts since years ago, talking ‘in the name of science’ pretending to be a scientist as she is saying she is. How many of them may realize in a short time what kind of fraud she is? Not many surely. Nobody having enough science background and reading enough what she says may not realize it, but it not should to be necessary the case of people (mainly new) visiting this forum.

You cannot ignore also how much confusing should to be for them to read all her confusing statements trying to convince that surgery is the only rational option, the only one that really work when some solution is needed. You know that she tries to convince parents that braist study not showed nothing very much significant about brace effectiveness and if you have some little idea about statistic, you know it’s absolutely false.
You also should to know how much important is what is read in forums for people affected by a non solved health affection as scoliosis is, because is not so simple as just only asking health professionals (physicians, surgeons, physiatrists, osteopaths..) what to do as you are saying.
If it would be so simple, there would not be scoliosis forums around the world like this. Or do you know appendicitis forums for instance? Nobody can say in each scoliosis case what is the best to do, as Pooka1 is also trying to convince.

You know what simple would be for anyone to do something similar but in the surgical section. And really it would not be need to be dishonest trying to confuse none. It might be possible anyway to scare parents (not only them) talking about surgical risks, and it would not be needed to talk justly about bad practices.
And you would be very much upset if someone would do that, who surely would be banned in a short time. But of course it should to be needed to be a really bad person or too much insane to do that. Anyone may do it and nobody is doing it. But you agree with what Pooka1 is doing in the non surgical sections, certainly you are one of the main supports she has to do her work here if not the main.

Too much unmoral, really what is done in this forum. Certainly all the responsible of what is happening here should to be prosecuted.

[hdugger]

But we have to avoid people going the other way to pseudoscience and google science.

I'm not sure what any of us are doing here if not pseudoscience and google science. I think I'm the closest person in this thread to someone degreed in reading medical literature, and even I consider myself a google scientist on the topic of bracing. I try to be a good google scientist, but I don't claim to be anything more than that.

So, not to press too hard here, but you're strenuously countering actual experts (two doctors prescribing a brace, in this case) with information of varying qualities which you've gotten off the net. You're culling a few posts from a blog (which has to be some level of confidence below an actual case study), you're delving into the methods section of a research paper to reinterpret the researcher's conclusions, and you're quoting one item as fact - "bracing only delays surgery" - which I think is even below the level of google science, since none of the googled results I come up with support it.

If what you want is discussions which are supported by research and participants who don't pretend to know more then experts, then you'll at the least have to model that behavior.

[Pooka1]

While it's important to have an open mind, it shouldn't be so open that your brains fall out.

That, in a nutshell, is my perception of the non-surgical sections of this forum. When there is so little research to anchor the comments, it's a free for all.

[Pooka1]

and you're quoting one item as fact - "bracing only delays surgery" -

I deny that. Show me.

[hdugger]

I have found that the main source of decision making comes from talking to one's doctor

Do you find that to be the case with bracing? In my experience, lots of people start to brace and then stop, and I don't believe they stop because their doctors have recommended that they do so. I believe they do it because the perceived benefit falls below the perceived cost. I don't have any quarrel with stopping because the perceived cost is too high, no matter what the benefit - if you have a kid who's really suffering in a brace, then you stop. That's pretty clear.

But what if it's a lower cost. What if your kid is having about the same level of discomfort as someone wearing braces on their teeth. Then the perceived benefit becomes very important - if it's a big benefit you press forward and if it's a small benefit you don't. If you are led to believe that there's *no* benefit to bracing, then why put your kid through any level of discomfort? And, if you're told that there's no benefit *and* that people who brace their children are brow-beating them and don't care about their child's pain, then why put your child and yourself through that discomfort.

Bracing is tough on kids, but it's also tough on parents. Chipping away at parent's confidence may easily be enough to get them to throw in the towel.

What Flerc says about doing the same thing in the surgical section is correct, I think. Deciding to put your kid through surgery is *very* difficult. I can almost guarantee you that I could go into the surgical section and raise enough reasonable doubt about the benefits of surgery along with some statements about how unfeeling it is to subject your child to all that pain with no guarantee that they would have progressed without the surgery and get at least one parent to put it off. Maybe they wouldn't stop, but they'd let their kid go an extra 10 degrees or so. Or maybe they'd wait 6 months and their kid would have stopped progressing, and then they wouldn't have surgery at all, and then I could point out that surgery wasn't needed to stop the progression.

So, yes, I absolutely believe it's possible to sway parent's opinions. I believe it so strongly that I absolutely do not do any of the things I just mentioned in the surgical section - because I don't want my feelings to influence their decision. And I think, as Flerc says, that everyone else here believes it strongly enough that if I started to do that - if I approached some parent about to go through surgery and started going on and on about how unfeeling it was to put your child through that - that I'd be swiftly booted off the forum.

[hdugger]

I deny that. Show me.

"And even the "successes" could be just delaying surgery for all anyone knows.

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

Perhaps it is this subset who goes on to progress with bracing only delaying surgery."

and there are bunch more that say the same thing but don't use the exact phrase.

Now, find me the review article on bracing which supports your statement that bracing only delays surgery. You're repeating it like a drumbeat - where are you getting it from?

[flerc]

I deny that. Show me.

As you say in thousands different confusing forms every time that Braist study didn’t show anything very much significant about good brace effectiveness (even until maturity beginning), it would be just only one more confusing way to say the same. I continue waiting for your demonstration about so bold claim as I asked you many times. Do you believe you already gave it? Quote it please.

[flerc]

But you agree with what Pooka1 is doing in the non surgical sections, certainly you are one of the main supports she has to do her work here if not the main.

Sorry Mariaf, I forgot the moderator, whose only ones interventions here are always to help Pooka1. As she has all the power here to delete posts, to close threads and banning members, her support is very more important than yours.
But not feel bad; think that instead of saying all this, we could be talking with Fahsai about night braces. The unmoral work Pooka1 is doing works! It’s a fact. And it seems to be the purpose of this forum of course and you are an important support although not the main, so congratulations anyway, you must to feel proud!

[Pooka1]

that I'd be swiftly booted off the forum.

Indeed. The evidence case is much better for surgery than for bracing and is MUCH MUCH better than the evidence case for PT.

You don't have any ground to stand on to make a case that surgery is not a net benefit for the vast majority who are in range and are medically fit. That case has not been made for bracing and certainly hasn't been made for PT.

You should get booted for gross misrepresentation in the service of unwarranted cruelty.

That's the difference. Honey.

[hdugger]

. . .

The example was in response to Maria's post about parents' decisions not being affected by discussions on the forum. My point was that parents' decisions *were* affected, and I gave as an example that I could affect their decisions about surgery just by spinning the research in a certain way and playing up the whole cruelty aspect. You are agreeing with me, correct? And disagreeing with Maria? with your strongly worded post that people should be tossed off the forum if they misrepresent information which could affect a medical decision?

So, again, that's my point. It matters what people say here. Decisions are altered - lives are changed. That's all I was trying to say.

[Pooka1]

The example was in response to Maria's post about parents' decisions not being affected by discussions on the forum. My point was that parents' decisions *were* affected, and I gave as an example that I could affect their decisions about surgery just by spinning the research in a certain way and playing up the whole cruelty aspect.

You can't do it honestly. That is completely different from how I operate.

You are agreeing with me, correct? And disagreeing with Maria?

No. I am confining this to honest approaches to the literature. Your example would necessarily be dishonest.

I am pro-evidence. People perceive that as pro-surgery because that's just the way the evidence falls out. I have no control over the evidence case because this is not my field. If the evidence case was like that for bracing and not surgery I would be viewed as "pro-bracing." By the way, being "pro-surgery" is a nonsensical descriptor. Nobody is "pro-surgery." People who are reality-based are sometimes viewed as "pro-surgery" though.

What you are not understanding is I follow the evidence. I don't come to the table with preconceived notions. My training is to try to avoid bias by being critical and skeptical. Lay people (which you are not which makes this perplexing) are not trained to do that and so may misinterpret what I am doing. All I can do is be intellectually honest.

with your strongly worded post that people should be tossed off the forum if they misrepresent information which could affect a medical decision?

This is an imaginary problem.

[Pooka1]

So, again, that's my point. It matters what people say here. Decisions are altered - lives are changed. That's all I was trying to say.

Yes. An example is CD took his daughter out of a brace after reading posts on this forum. And she made it to maturity under the surgical range without bracing as against medical advice. But CD is a scientist. He had an open mind, was able to consider the literature such as it was, and made a decision that helped his daughter immensely. It might be that only people with training in critical thinking skills can or should approach the literature.

But you will never show a case where someone took a child out of brace or PT and that made them surgical. It is impossible to show that. It is impossible to show the brace was necessary or effective.

All that can be shown is changes for the better.

[flerc]

Indeed. The evidence case is much better for surgery than for bracing and is MUCH MUCH better than the evidence case for PT.

You don't have any ground to stand on to make a case that surgery is not a net benefit for the vast majority who are in range and are medically fit. That case has not been made for bracing and certainly hasn't been made for PT.

You should get booted for gross misrepresentation in the service of unwarranted cruelty.

That's the difference. Honey.

There was a lot of bad outcomes with Harrington roads.
There are not evidence of a normal complete life with surgery using new technollogy. Not only not known evidence, there was never just only case known or unknown yet. You cannot say the same about brace or PT.
You are not get booted because there is a moderator here allowing to do the unmoral work you do.

When do you give the racional demostration I asked you many times? People believing you are a scientist as you said may be feel defrauded. They might became to realize which is your work here.

[Pooka1]

There was a lot of bad outcomes with Harrington roads.

Yes there is still no good answer for lumbar curves. But as much of a shortfall as surgery is for lumbar curves, it still must be better than no surgery or else people wouldn't get it. Please just think this through. Please.

There are not evidence of a normal complete life with surgery using new technology.

That isn't the issue. The issue is whether the life is better with surgery than it would otherwise be. What you are not accepting is normal is that off the table. This is game of cutting losses.

People believing you are a scientist as you said may be feel defrauded.

It is not important to me whether people understand I am a scientist. It shouldn't matter. You don't need to be a scientist to think critically and be skeptical.

[hdugger]

You can't do it honestly.

I suspect you'd be uncomfortable if I followed your template in this discussion exactly up in the surgical section.

I'll throw out the most egregious example - the repeated and unsupported claim that bracing only delays surgery - and confine myself only to claims which the are actually supported for surgery.

What if I just greeted every parent about surgery with a long list of hey's blog posts about failed surgery in teens. Young people coming to him for a second surgery. So I'd have a long list of these things (because we've seen many of these cases just on the forum.) And if sort of wring my hands about it, and talk about how sad it is. What if I just stuck to that. I wouldn't even bother with the research. I wouldn't talk about the sad lack of randomized studies. I wouldn't start talking about how emotionally difficult surgery was for these kids. I'd just have my own version of hey's failed teens which I helpfully posted every single time anyone asked about surgery. Could I get one parent to second guess t their opinion. I imagine I could.

It's not about logic or what the research shows or clear thinking or any of those things. If I wanted to keep a few kids off the operating table I could do just one of the things you're doing in this discussion and have that happen.