How tight should a night time brace be?

[Pooka1]

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.

First of all there is no long list of failed surgeries in teens. That is dishonest.

Lumbars are not solved by conservative or surgical methods to any great extent. But would the people who get surgery be better off without surgery? That is the question you NEVER approach because if you did, we could all go home.

If people were better off without surgery then nobody would get it. Logic 101.

Young people coming to him for a second surgery.

Definitely not a long list. Dishonesty creeping in here in an effort to move away from the evidence.

And are you assuming that is due to surgeon error? All surgeons can do is take patients as they come and try to help.

[Pooka1]

Too much metadiscussion. You can respond but I am done. I think you are being dishonest in your arguments.

[flerc]

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.

You are assuming that always people does the best. Why are you assuming that? A scientist would never say something like that.

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.

The issue was evidence of surgery vs brace & PT. You said is much better for surgery and not justified it. A scientist would never do that.

Certainly in almost every of your post I may say the same. Any scientist not affected by scoliosis would have fun here reading what you say.. and pretending to be a scientist.

It is not important to me whether people understand I am a scientist. It shouldn't matter.

Yes it is important since really many people is reading your posts and of course they would give much more credit to all your confuse speech if you would be really a scientist. I perfectly know that none scientist in the world would say the kind of things you said here.. at least without having a particular interest. But it not necessary may be also clear for everyone. But everyone understand that a scientist would never deny to prove what says.

So again:

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.

[mariaf]

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

Great line - I've never heard that before.

Before anyone makes the wrong assumption, let me say that I am NOT making light of scoliosis (nobody has to tell me how serious it is, believe me), but in OTHER situations I may have to use that line. Like maybe when my teenage son wants to do something that is against my better judgment and he asks me to have an open mind.....

[mariaf]

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.

Agreed. But stopping bracing because your child is suffering is not the same as stopping because Pooka said so, which was inferred by flerc's posts (at least that's how I interpreted them).

Perhaps I should have said that we, as parents, make initial decisions based on our doctors' advice. Then, going forward, we might want to 'tweak' the treatment plan after discussing it with the doctor. Speaking for myself, I am fortunate in that David's doctor welcomes my input - it's very much a team approach - but I am not making decisions because of what anyone here posts - and I give most folks credit for being smart enough to act similarly.

[mariaf]

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.

I guess we have to agree to disagree. I have dealt with well over a hundred parents in the past decade - through several online groups like this one (one that I co-moderate), by emails, on the phone, etc. and I have found that the VAST MAJORITY have done an amazing amount of research, spoken to one or more experts in the field and would not be swayed by anything they read that a lay person here posted, especially if it conflicts with that medical experts had (sometimes unanimously) told them. Might it get them thinking? Sure, and that's a good thing. Could there be ONE parent somewhere who might be swayed? Probably, but he or she would also likely then be swayed by listening to neighbors, friends, maybe the mailman - not much we can do about that.

[Pooka1]

Could there be ONE parent somewhere who might be swayed? Probably, but he or she would also likely then be swayed by listening to neighbors, friends, maybe the mailman - not much we can do about that.

CD claimed my comments on the state of the bracing literature lead him to examine more in depth to the point he took his daughter out of brace. And she stayed subsurgical to the point of maturity.

The overall bottom line to this interminable meta-discussion for me is that I guess I want to throw a lifeline out to parents to NOT beat themselves up over not bracing or not doing PT because there is not way to trace that action to any surgery. That is, there is no way to show a child was surgical due to not trying a conservative method.

I am not claiming it is irrational to try bracing or PT. I am providing cover for parents based on the state of the literature. I am hoping no parent is doing bracing and PT for themselves as opposed to the child.

That's my goal.

[hdugger]

Definitely not a long list.

http://drlloydhey.blogspot.com/2013_09_01_archive.html
http://drlloydhey.blogspot.com/2013/...rgery-for.html

Here's two teens in for revision surgery shortly after their first surgery went wrong, and I only looked at one month.

Yes, there's a list. I don't post that list, or create threads each time I see one of these, because I know that it might interfere with parental decisons. I know that I'd be intentionally swaying that decision by cherry-picking htese stories and just repeating them.

But I could, with all honestly, present surgery or VBS or any other procedure in exactly the same light that you're presenting bracing here.

[hdugger]

My two links were from September 2013 (the most recent month in which Hey was posting regularly about his office visits)

Here's August 2013

Spent some time this evening talking to a mom of a 16 yo boy who has a Grade IV spondylolisthesis with severe flat back syndrome and pain after surgery performed a year or two ago elsewhere. These are tough problems. More on that later.

and July 2013

We also helped a 26 yo woman from Fort Worth, TX who came here with painful spinal hardware put in about 12 years ago.

[hdugger]

And I'm not even including all of the cases with complex revision surgeries in adults after having a surgery as a teen - there are lots of those just in those months that I skipped over.

This is only young people in for their second surgery because the first one didn't work.

[hdugger]

"That is, there is no way to show a child was surgical due to not trying a conservative method."

You can show the odds. 50% of high risk children won't progress to surgery and 50% will.

Bracing 7 hours reduces those progressing to 25%

Bracing 13 hours or more reduces those progressing to 10%

So, 40% of those *not* bracing progressed to surgery because they didn't brace 13 hours a day.

That's why you do a randomized study - to pin down those odds.

[Pooka1]

Those at kids who were <50* when they had 25% more less remaining (the end point). You are welcome to hang you hat on that but I wouldn't browbeat a kid into wearing a brace over that.

Hindsight is 20/20. You can NEVER predict for a particular child whether they will be helped by brace and your DAMN WELL can't predict after the point of maturity, at least until we see the final curve measurements which were conspicuous by their absence.

[Pooka1]

"That is, there is no way to show a child was surgical due to not trying a conservative method."

You can show the odds. 50% of high risk children won't progress to surgery and 50% will.

Bracing 7 hours reduces those progressing to 25%

Bracing 13 hours or more reduces those progressing to 10%

So, 40% of those *not* bracing progressed to surgery because they didn't brace 13 hours a day.

That's why you do a randomized study - to pin down those odds.

29 kids in each of those groups by the way. You can hang your hat on 29 kids if you like but I wouldn't.

[flerc]

I am not claiming it is irrational to try bracing or PT.

WOW!!! I should to quote all the thousands of posts where you claimed exactly that!. I was asking you to delete of them, something you never did. It’s what someone honest would do of course.
And you are saying to be a scientist? This forum is not only unmoral, it's definitely funny.. unfortunately I cannot have fun with anything having to do with scoliosis

[hdugger]

I wouldn't browbeat a kid into wearing a brace over that..

You're setting up a false division. No one in this topic has ever recommended "brow beating". All I've recommended is clearly stating the odds and quoting the literature instead of creating a false picture with cherry picking blog posts, misrepresenting the available research, and calling people names if they do just quote the research.

You can NEVER predict for a particular child whether they will be helped by brace..

No, obviously. Nor can you tell a particular child that they won't go on to future surgeries if they have one as a teen. What you can do is what one does for any decision - quote the odds and let people decide for themselves what the risks and benefits are.

You can not brace a high risk kid at all and have a 50/50 chance of them progressing to surgery as a teen, or you can cut the risk in half by bracing 7 hours a day, or you can reduce the risk fourfold by bracing 13 hours a day. Those are the odds. Everyone gets to decide for themselves, given those odds, what they want to do. No brow beating, no drama, just the best information that's available.

and your DAMN WELL can't predict after the point of maturity

Sure you can. Just take a second to look at the long-term research. Here, I'll help. I googled on long term effects and here's the first result that came up. It's a recent study of kids of kids bracing with the Boston brace looked at 20 years down the road.

http://www.ncbi.nlm.nih.gov/pubmed/19709435

When they started bracing, the average curve was 33 degrees, at weaning, it was 28 degrees. 20 years down the road, the average curve is 35 degrees. So, not only did the brace keep them, on average, sub-surgical at maturity. It kept them sub-surgical 20 years down the road.

Where would this particular cohort have been if they hadn't braced? Well, according to the research, half of them would have progressed to surgery. How would that half have looked 20 years down the road? Well, they would have had Harrington rods, which didn't work out so well for people with lumbar curves. How many of those unbraced kids would have been on their second surgery, with a Harrington rod revision, while these braced kids haven't had their first?

If you want to paint a different picture, stop cherry picking blog posts and quoting outcomes which aren't supported by the research. *Show* me that what the odds are of bracing only delaying surgery. Give us a number we can make sense of.