How tight should a night time brace be?

[mariaf]

hdugger,

While I don't agree with some of your 'corrections', I'm not going to debate that here. I was commenting on what Pooka posted about CD claiming that her comments on bracing led him to examine everything more closely and re-think his position. I stand by what I said that there is nothing wrong with that.

[hdugger]

And there is nothing wrong with leading someone to examine anything more in depth.

Leading to examine is good. Scattering a topic with unsupported and inflammatory statements is not. Here's a gathering of unsupported, inflammatory, or just flat out wrong statements from just the first page of this discussion, with my corrections:

"VBS and tethering, while still experimental, are much more robust than either bracing or PT" - untrue. Bracing has far more research, more years of research, and randomized research then either of these methods.

"Here is Dr. Hey dealing with the aftermath of a child, now grown, who feels she was lied to.".. - "Lied to" is very inflammatory and does not appear anywhere in Dr. Hey's posts. I could write exactly the same tag line by any of the four posts I quoted from Dr Hey in recent months where young people had to have a second surgery. Parents are not "lying" when they hope something will work and it doesn't.

"Not trying a conservative method like bracing and PT is not equivalent to choosing surgery because of the over-treatment rate and lack of evidence of efficacy. " The research supports an over treatment rate. Is does *not* support a "lack of evidence of efficacy. There is evidence of efficacy.

"And even the "successes" could be just delaying surgery for all anyone knows." - Not supported by the long term research. Braced kids are holding their sub surgical curves 20 years out.

"The only way surgery would be a choice is if PT and bracing work would be known to work." - Bracing's effectiveness has been shown to work.

Again, just one page of posts from a single poster in one topic on this forum. There are hundreds more such statements all over the forum.

How is any of this helping people to make a wiser decision?

[flerc]

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.

What a different Pooka1's version we are seeing now! Do you remember Hdugger when she said that only desperate and ignorant parents may think in brace or PT and when she only gave credit to recognized researcher’s articles as this Braist study is?

[mariaf]

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.

And there is nothing wrong with leading someone to examine anything more in depth. We want people to examine, re-examine, research more, etc. That's all good -- and as I have said before, I give parents credit for being smart enough and informed enough to take it all in, digest it all, and then decide what is best in their particular situation.

[hdugger]

And here's a comparison of SRS-22 scores (higher is more satisfaction) from braced and surgical kids long term. The brace data is 20 years out, from the study I quoted previously, and the surgical is 10 years out from this study (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2200705/), based on the current instrumentation

Braced patients 20 years out:

SRS-22: pain 4.2 (0.8), mental health 4.2 (0.7), self-image 3.9 (0.7), function 4.1 (0.6), satisfaction with treatment 3.7 (1.0).

Surgical patients with current instrumentation 10 years out:

SRS-22 questionnaire for general self-image, function, mental status, pain, and satisfaction from treatment were 3.8±0.7, 3.6±0.7, 4.0±0.8, 3.6±0.8, and 4.6±0.3, respectively at the last follow-up visit.

You have to kind of move them around to get them to line up right, but the braced kids are fine and they're 10 years longer down the road then the surgical kids.

[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.

[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

[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.

[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.

[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.

[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]

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]

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.

[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.

[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.