How tight should a night time brace be?

[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.

[Pooka1]

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

I deny that. Show me.

[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.

[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.

[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.

[mariaf]

Maria, I quoted a study awhile ago where, if people read a scientific article and then read a comment with a personal invective, it colored what they thought the article said. That's why one of the science magazines closed their comments section - because emotional heat was actually changing the way that facts were perceived. Hence my sense that it makes it more difficult for people to consider information clearly.

Notwithstanding this study (and studies can say all different things, sometimes 2 studies will even conflict each other), speaking for myself and the dozens of parents I have dealt with over the years, I have found that the main source of decision making comes from talking to one's doctor, sometimes consulting with 2 or 3 experts in the field, and weighing what they say.

I was just trying to calm flerc's fear about parents using what we say on this forum to make decisions. Of course, we all read all sorts of things every day (articles, forums, etc.), but I give most people credit for being able to sort fact from opinion. And ironically, Pooka sticks to facts and science as much, if not more, than most.

[Pooka1]

I am trying to get people to think critically. I am trying to get them to think like scientists. In normal life this is not so critical. In a serious medical situation, it matters more. I am scared for people with little science background when faced with this.

Surgeons have a range of opinions on many things. That fact needs to be brought on board and fully embraced.

People want answers. The research literature is the best bet but it isn't so good, especially in this field where the research is hard to conduct.

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

It's a very dicey situation on this forum in my opinion.

[hdugger]

folk science

Honey, you got to let it go with the folk science shtick (see, is that the right spelling I chose? Beats me!).

But, seriously, really, let it go. If you want to just blurt out every once in awhile that you think Dingo is a poo poo head, be my guest. But this sort of "people who post folk science (nod nod wink wink)" stuff is way too high school for my taste, and I didn't even *go* to high school.

I like Dingo and I find the stuff he posts interesting. If that strips me of my MPH (capitalization? Don't know, and I got the darn degree) in your eyes, so be it. I'm happy to be just folk.

[hdugger]

emotional heat (which I deny on my part, by the way).

You may well not feel hot, but you *read* very hot. Especially when bracing is raised as a topic. The topic shifts from whatever we were talking about to these very broad brush strokes where people who feel that bracing might work are somehow thrown in with those who might browbeat children while those who suspect that bracing doesn't work are the only ones advocating for the child's interest. And then it's just devils and angels all the way down.

Again, it makes it extremely distracting to just focus on the facts at hand. Can we just assume that no one is trying to harm, and that no one has an infallible grasp on the research?

BTW, maybe you've guessed or maybe you haven't, but I've no idea how to spell cavalier. I always start out spelling it cavilier and then the spell check calls that out, so I click on it and pick the first suggested spelling. Which, it turns out, is also wrong. I'm just a really lousy speller, much to the chagrin of my mom, the English teacher.

If I want to insult you, trust me, I'll just insult you.

Anyway, before I got distracted, this is what I was thinking about what your fear might be, in this case. And you're perfectly welcome to correct me - it just sort of jibed with the what I saw going on. So, is the issue that you think this particular kid has a false double major which will become a real double major over time if she braces? That is, that she'll make it to adulthood with a slightly sub-surgical curve, but then the lower curve will become structural as she ages and she'll eventually need a full fusion?

[Pooka1]

We all have identified our "dangers to society." You think it is me. I think it is folk science.

By this I am NOT claiming the research literature is folk science. I am claiming that skepticism is in order here as it is for the folk science that gets routinely posted on this forum.

I have repeatedly asked our friend flerc if he thinks BrAIST is a landmark study. By any estimate BrAIST is *IS* a landmark study. The reason he demurs is because I previously posted a link showing that only a small percentage of results from "landmark" studies are successfully reproduced. The same can be assumed for BrAIST though the other issues are probably enough at this point to remain skeptical.

If the results can't be reproduced, does it mean BrAIST is wrong or the second study is wrong? Who knows. They could both be wrong for different reasons. Or BrAIST could be correct (after addressing the caveats most especially the long term picture). This is a hard game. Half the battle is appreciating that fact.

[Pooka1]

Maria, I quoted a study awhile ago where, if people read a scientific article and then read a comment with a personal invective, it colored what they thought the article said. That's why one of the science magazines closed their comments section - because emotional heat was actually changing the way that facts were perceived. Hence my sense that it makes it more difficult for people to consider information clearly.

Not directed at you but abject ignorance probably changes the way facts are perceived more that emotional heat (which I deny on my part, by the way).

We all have identified our "dangers to society." You think it is me. I think it is folk science. Again not directed at you; I think you know folk science when you see it but fail 99% of the time to point it out because you don't perceive it as a problem. <shrug>

[hdugger]

. . .

I'm asking a genuine question - I'm not attributing motives to you, I'm not calling you names, I'm not fighting. I really am genuinely asking you a question. It feels like you have a huge amount of heat in this topic and I really can't figure out why. Who or what are you trying to save? From whom?

If you want to ascribe motives to me and call me names, that's certainly your prerogative, but it's nothing I'm interested in engaging in. Believe what you like and feel about me any way you like. If you want to talk about research or facts, I'll engage but for this stuff, you're really on your own.

I will make one small suggestion - isn't it possible that my spelling isn't all that good? I mean, again, think what you like, but I believe you've over-estimated my spelling skills as well as my plotting skills.

Maria, I quoted a study awhile ago where, if people read a scientific article and then read a comment with a personal invective, it colored what they thought the article said. That's why one of the science magazines closed their comments section - because emotional heat was actually changing the way that facts were perceived. Hence my sense that it makes it more difficult for people to consider information clearly.

[Pooka1]

the most cavalier about it as we see in these posts.

Here is my usage of the word, "cavalier" and it is spelled correctly. I am confused about why you continue to spell it incorrectly and imply I did. Why do you continually put the misspelled word in quotes?

[Pooka1]

"caviler,"

Are you repeating this so much because I made a typo (if I made a typo?)?

Are you seriously that childish? I think you are around the bend. You never would have done this before you flipped.

[Pooka1]

If Pooka1 are really emotionally involved in a brace decision, then she must to see a doctor, but is absolutely unmoral what this Forum is allowing/promoting. It should to be shut down. How many parents around the world may be influenced reading her so much confusing claims against every non surgical option, believing she is a scientist as she is saying? MY GOD!!!

All I can do is state I am LAY person and this is NOT MY FIELD. Now how many times have I written that? Give me your honest assessment. Just look slightly upthread for the most recent instance which was REALLY recent.

The only way forward is intellectual honesty.