How tight should a night time brace be?

[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.

[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.

[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?

[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?

[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.

[flerc]

Fortunately you are not also saying to be a scientist..

[Pooka1]

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

Do you consider this to be a landmark study?

[Pooka1]

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

Do you consider this a landmark study?

[flerc]

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.



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.



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.

Certainly I’d want to be able to have fun also with things having to do with scoliosis.
Imagine someone supposing a scientist could need the kind of explanations you are giving to Pooka1! It would not be funy? But Pooka1 certainly need such kind of explanation, so is not funny what you are doing, is just only right. What is funny is that she is saying to be a scientist!
But of course I cannot forget how much damaging is what she is doing.
Imagine a parent reading some of her thousands of posts in the non surgical section believing she is really a scientist as she says! Nothing funny of course.

[hdugger]

I'm going to take your word that parents aren't overly influenced by this stuff. I'd been hyper careful about what I said about surgical treatments because I didn't want to sway a medical decision, but I think that that's created an unrealistic view of the choices because everyone is talking about the risk of bracing and no one is talking about the risk of surgery. I think the way I'd been approaching it before, while it seemed respectful, probably created an overly rosy picture of surgical procedures and didn't tell the full story.

Looking at the long term research again reminds just how little is known about all of these surgical treatments down the road. Tethering, obviously, just because it's a handful of kids and a few years, and VBS with a somewhat larger sample and some more years. But even fusion surgery is using materials and techniques so recent that we haven't seen a single teen in their 50s who had this surgery done.

Harrington rods looked pretty good this far out. It wasn't until 30 years down the road when all of the problems became obvious and people started having serious back problems that required removing all their hardware.

So, what do we tell these kids about all of these procedures? Bracing can have bad consequences but all of it's odds and consequences are known - we've been bracing kids in exactly these braces forever. We're not suddenly going to be surprised by some unforseen outcome like we could with these surgical methods. We're not suddenly going to have a generation of kids with flatback, as happened with surgical techniques.

Is overcorrecting safe, 30 years down the road? Or does it put too much force on the spine, or create problems above or below? We just don't know. I don't mean that I'm not looking up the research, I mean that there aren't any data points to look at. It's just one huge experiment for which we have no way of looking down the road. We're all *hopeful* that things will turn out OK, but it's too soon to say anything for sure.

[hdugger]

As just one example of things we just can't know yet, Linda mentioned a concern that VBS could affect growth. That's just a concern - I don't think they've completed the research on it, and obviously, if it turned out to be true, you'd have to weigh that against all the of the known problems in letting a curve progress in a young kid.

But my point is that we just don't know. We haven't seen these kids down the road, so we don't even know, now, what might be down that road.

I think that unknown quality of current surgical procedures has to be weighed into any decision.

[Pooka1]

the risk of bracing and no one is talking about the risk of surgery.

Bracing is a choice.

Surgery (for kids in surgical range who can handle it) is not.

Until you acknowledge reality on this point, your comments will be inapposite.

Surgery is about cutting loses. Normal is likely off the table north of 30*. Many kids in bracing range are looking at uneven loading of the spine the rest of their lives and its ramifications no matter what the outcome. It is this point that you and others resist.

[Pooka1]

I think that unknown quality of current surgical procedures has to be weighed into any decision.

Well we KNOW my daughter looks and feels normal for YEARS since her fusion and attended high school and is now in college instead of being a twisted up recluse in her room with no future due to her scoliosis. If she even could survive her curve.

[Pooka1]

There is a reason fusion and non-fusion surgery exists. That reason is that the alternative (not having surgery) is almost certainly worse.

The lumbar H-rod patients. Are they better or worse with flat back (that can be fixed) than with NO surgery? You are still thinking in terms of "normal" and not "cutting losses." You are not alone in this. Your refusal to ask the pertinent questions is what fuels your continued tilting against windmills in this and other threads.

Until you accept that there are logical reasons for things like this, you can't argue these points because it sounds like you are not following along. For example, painting surgery as a choice. If surgery was really a choice, nobody would get it. Your arguments implode under their own incoherence.

[hdugger]

They're all the same thing.

Both are choices, both are elective, and both are meant to accomplish the same thing - to keep the curve from continuing to progress.

Their difference is in how big the curve is that they're trying to keep from progressing. Bracing holds the curve at the low end and surgery holds it at the high end.

But, just as no one can say that a braced curve would ever have gotten any larger, no one can say that about a surgical curve. You could fuse a curve at 40 or 50 degrees which would never have reached the surgical stage if you hadn't fused. You fuse at 50 because the odds are that it will, eventually, advance to surgery. But the key word there is "eventually." You're putting a teen on the operating table to keep a 30 or 40 or 50 year old off the operating table.

Because of the current surgical triggers, you're actually doing something different with bracing. You're bracing a teen to keep a *teen* off the table. You're trying to keep that first surgery from happening.

As you say, none of this is chemo for cancer. This kids are going to live a long life, no matter what treatment you do or don't do. That's the good news for parents. The bad news is that you don't know how the future will play out depending on the choices you make.