How tight should a night time brace be?

[hdugger]

I agree completely about what you said about bracing, that it can be effective and still be intolerable for a child or family.

I may have said this before, but my son was anxious as a teenager and particularly anxious about medical treatments (although he's completely brave now as an adult - go figure). I very much doubt that he could have tolerated a brace no matter how effective we thought it was. No one offered us a brace, so we never had to make that decision, but I'm fairly certain we would have tried it (very briefly) and failed out (almost immediately).

So, I am in no way *faulting* people for not bracing. Again, I doubt we'd have successfully braced, given my son's aversions. I'm really just trying to work out how effective these various treatments are in order to present a clear picture to people who do feel like bracing, or VBS, or something else is a reasonable option for them. Some kids, who are not like my son, actually seem comforted by a nighttime brace. Again, that wouldn't have been the case for my kid, but I certainly accept that it could be true for someone else.

My son, OTOH, *could* have tolerated VBS (had he been a candidate). For some reason, going under did not scare him at all. But the experimental nature of it would have been very hard for me (again, just because of my personal characteristics). He would have decided, as he does, and I would have (quietly) freaked out (as I do).

So, in these discussion, I'm not trying to advocate (although I know I often seem to be). I'm trying to parse out the personal part (can your kid tolerate it) from the medical part (does it work) to create a fuller picture for all of these things so that someone else can make a decision based on the best information available.

[leahdragonfly]

Hi hdugger,

I understand your desire to clarify the data…please keep in mind however that no one should ever be making decisions for their child's treatment from something they read on an internet support forum. The best source of info about a particular child's treatment is of course from a qualified orthopedist. The purpose of a support forum should be, well, support, as well as general info I suppose. So I wouldn't worry too hard about trying to do a lay comparison of bracing vs VBS, because it is really not applicable to any particular child whose parent might be reading.

Support forums can be invaluable if people share their experiences in an honest and helpful manner, such as how Maria shares info about how effective VBS was for her son. That is how I came to know about VBS. However, I doubt I would have put any stock in an online discussion by lay people of efficacy of VBS vs bracing.

I must ask about your comment about night bracing as I found it very strange…that some kids find a night brace comforting. Would you mind expanding on this idea please? I can't imagine ever describing a brace as "comforting." Certainly a world better than a 23/7 brace, but comforting??? I'd take a fuzzy blanket myself, if I had the choice.

[hdugger]

On support forums, in the same way that people experience things in different ways, people understand them in different ways.

I feel that people's stories, while valuable, can create an incorrect image of the big picture. For example, I'm in a forum, here, with lots of people with only scoliosis. Almost no one has kyphosis, like my son. So, the stories about how successful fusion is don't really apply to him, because the success of kyphosis surgeries is very different. If I had just relied on stories from here, I wouldn't really understand what fusion would be like for him. It wasn't until I looked at the research that I realized that I had different things to consider from the parents here.

Likewise, because there are so many fusion patients here and so few bracing patients, if I were thinking of bracing my kid I'd just hear stories from people who had decided not to brace. And that might make me think that no one is really bracing any more. But, I can go to a different forum and lots of people there are bracing. And then, when I listen to their stories, I come to a completely different understanding. Now it seems like bracing is something that works for some people. Or, if I went to the Clear forums first, I'd find out that surgery was a huge risk. Now sharing with other parents has just confused and misinformed me.

So, while I appreciate the shared stories, I also understand that they're not, necessarily, a representative sample of the big picture. So, I also rely on the view from a mile up - I look through papers and get the risks and benefits straight in my mind. It's just the way I do things. So, because it's the way I reach a decision, it's the thing I share. For other people, like me, who really want to grapple with all of the facts and look at it from every angle, I try to make that information clear.

Other people decide and share in other ways. No one way is right.

I must ask about your comment about night bracing as I found it very strange…that some kids find a night brace comforting. Would you mind expanding on this idea please?

I can't expand - I've just heard some kids talking about it in that way. I've heard some adults who use braces after surgery say the same thing. I accept that they have a positive experience to share about braces in the same way that other people have negative experiences with braces. People are just different - who can understand any of it.

[hdugger]

One other thing I've both read about and experienced repeatedly on medical forums is that people understand overall risk with a very slanted view towards their own experience. Everyone does it. You could walk down the safest street in all the world - a place where no crime has happened in 100 years. But, if you get mugged on that street, you are not going to walk down it again, no matter that your risk assessment makes no sense at all from a mathematical viewpoint. It is just what you end up believing, because personal experience just overwhelms everything else.

So, people with tiny curves at maturity who progress feel like the risk of that is huge, even thought it rarely happens. People for whom bracing doesn't work, think that it won't work for anyone. My sister-in-law had a colonoscopy that missed a stage 4 cancer, and now I'm completely convinced that colonoscopies don't work. It's just the way things are. So, again, while I appreciate people's stories, I understand that everyone has a perspective. Everyone feels that things are true which may not be true, and everyone wants things to be true that may not be true. No one is trying to mislead anyone, but it is very, very easy to be misled.

So, again, I'm cautious about stories. I try to make sense of them on a large scale, but I am *very* circumspect on the small scale.

[mariaf]

The only purpose for strict VBS criteria is to make sure surgery is only offered to kids who have a high probability of benefiting from it. Period. It is a careful weighing of risk vs benefit. Those who suggest that the VBS criteria is strict to make Dr Betz look good, or to artificially pump up the stats, are so far out of line I can not stand it.

Well said, Gayle. Although I truly hope (and have given everyone the benefit of the doubt in this regard) that nobody's thinking here could possibly be that far out of line.

You mentioned that you have been around VBS, the doctors who perform it (not just Betz), and the parents whose kids have had it, for 6+ years. For me it is pushing 10 years. That's also how long I know Dr. Betz. When someone is as humble and as open as he is - and has treated your child for a decade - you develop a very close relationship with them and get to know them pretty well.

One of the things that also sets Betz apart from other doctors I've met is that he not only tries to keep me involved in every step of my son's treatment, but he tries to make sure that he shares with me (either directly or through Janet, his PA) any information that might benefit other families that I might be in contact with.

If I had a dollar for every parent who has told me that they don't know what they would have done without him (and/or Janet), I could go in and quit my job tomorrow.

I have seen him help more families than I can count (and not always by recommending VBS/surgery), and there's no extra dollar in it for him.

In the unlikely event that anyone would question his motives, I hope I have put that to rest.

[mariaf]

I would add that, although I understand that these kids are tolerating VBS well, there is also a risk of overtreatment with VBS. You treating a small curve (no more than 35 degrees), without knowing for certain whether or not the child would have progressed without the treatment.

You are correct, although more than a couple of doctors have told me that for a young child with a 35-ish curve, there is a very strong chance for needing fusion at some point. I also would not necessarily call a 35 degree curve small, especially if we were talking about a younger child.

Here's what's more relevant IMHO. Your point, while well thought out and not unreasonable, may always be moot because *most* parents (in fact, I can't recall meeting one who does not fit this criteria) would not be able to stomach 'rolling the dice' and doing nothing (i.e., watch and wait) if their young child had a 35 degree curve, particularly if most doctors were recommending some form of treatment (bracing or otherwise) to stop the curve.

So, that leave VBS or long-term, full-time bracing as their only chances to try to stop progression and/or risk needing fusion.

With everything I have seen over the past decade I would go with the former, but that's just me. I just think to start talking about 'overtreatment' is only going to cloud the facts for these parents because as I mentioned, it's not a real possibility for most parents to just sit and see what happens.

[hdugger]

I just think to start talking about 'overtreatment' is only going to cloud the facts for these parents because as I mentioned, it's not a real possibility for most parents to just sit and see what happens.

Agreed. I think Gayle brought up the overtreatment term when talking about bracing these kids. I was just saying that it would be the same % overtreatment no matter what the treatment (VBS, bracing etc).

[Pooka1]

Well said, Gayle. Although I truly hope (and have given everyone the benefit of the doubt in this regard) that nobody's thinking here could possibly be that far out of line.

You mentioned that you have been around VBS, the doctors who perform it (not just Betz), and the parents whose kids have had it, for 6+ years. For me it is pushing 10 years. That's also how long I know Dr. Betz. When someone is as humble and as open as he is - and has treated your child for a decade - you develop a very close relationship with them and get to know them pretty well.

One of the things that also sets Betz apart from other doctors I've met is that he not only tries to keep me involved in every step of my son's treatment, but he tries to make sure that he shares with me (either directly or through Janet, his PA) any information that might benefit other families that I might be in contact with.

If I had a dollar for every parent who has told me that they don't know what they would have done without him (and/or Janet), I could go in and quit my job tomorrow.

I have seen him help more families than I can count (and not always by recommending VBS/surgery), and there's no extra dollar in it for him.

You and your partners in the VBS site have really made a difference for a lot of kids. It's something to be very proud of!

In the unlikely event that anyone would question his motives, I hope I have put that to rest.

As we have seen, there is no escaping conspiracy theorists.

[Pooka1]

Agreed. I think Gayle brought up the overtreatment term when talking about bracing these kids. I was just saying that it would be the same % overtreatment no matter what the treatment (VBS, bracing etc).

This comment confuses and conflates JIS and AIS.

[hdugger]

This comment confuses and conflates JIS and AIS.

No, note the phrase

bracing these kids

Overtreatment for these kids is a measure of the risk of progression for these kids. It is a risk based on population characteristics.

The risk of overtreatment (by brace or VBS) is exactly the same when looking at a single population regardless of the treatment chosen.

[leahdragonfly]

No, it's not, not when the treatment criteria are not the same by any means. VBS is used for 25-35 degrees with the requirement of significant growth remaining, and bracing is used for 20 degrees to 40(+) degrees, sometimes even less for kids considered very high-risk, such as my son (and he now appears to have a spontaneously resolving curve. VBS would never have been offered to him). So by excluding the large group that are 20-25 degrees, with probably a low/er risk of progression, you are reducing the risk of over treatment from VBS. Also, you are removing virtually all the post-menarchal girls with 20-degree curves who would not be offered VBS.

The over treatment rate is simply not comparable, no matter how much you want it to be.

[Pooka1]

No, it's not, not when the treatment criteria are not the same by any means. Bracing is used for 20 degrees to 40(+) degrees, VBS is 25-35. So by excluding the large group that are 20-25 degrees, with probably a lower risk of progression, you are reducing the risk of over treatment from VBS. Just saying...

She is also referencing the over-treatment in AIS is reference to bracing in JIS. Apples and oranges.

[hdugger]

The over treatment rate is simply not comparable, no matter how much you want it to be.

I suspect we're talking past each other. My point was that, considering the exact same population (kids from 25 to 35 degrees), the overtreatment would remain constant no matter what the treatment.

The reason there's a difference between overtreatment in bracing and VBS in JIS kids is *not* because there's a difference between the two treatments, but because one treatment (VBS is being used in very few centers and the people in those centers are, apparently, all agreeing to only use VBS when kids are between 25 and 35 degrees.). Bracing, OTOH, is under no such control. Any doctor can and will individually decide that they're going to brace a kid with a smaller curve. And, once that doctor does that, or once a group of doctors do that, then the overtreatment rate will change *because they are including kids with smaller curves*

One could imagine that, 5 years in the future, lots of sites would be performing VBS surgeries and many of those doctors would try it on smaller curves. It's overtreatment would go up. That wouldn't be because it was suddenly different. It would be because the protocol was loosened.

You could certainly argue that bracing shouldn't be used in kids with 20 degree curves because they're likely to be overtreated. That's a fair argument. I suspect the reason that they use bracing in those small curves where VBS is not used it simply what Maria said earlier - Betz et al don't want to do surgery unless there is an overwhelming reason to do so. Bracing, because it is not surgery, is considered safer, thus used in smaller curves, and thus, more at risk of overtreatment.

That's really all I'm saying.

[hdugger]

Maybe a simpler way of saying it is, you, as a parent, can pick your own risk of overtreatment. If you have a kid with a 20 degree curve, you could decide not to brace until they were 25 degrees and drop the risk of overtreatment substantially. You could decide not to brace at all, and drop it to 0. But, if you decided to wait to brace until the child was 25 degrees, you would run exactly the same risk of overtreatment as you would if you chose VBS when they were 25 degrees. In fact, you've done just that with your son, by exerting your right as a parent to determine how you feel about the risk of overtreatment vs. how you feel about the risk of progressing to surgery.

My only point in clarifying this is that I think sometimes in these discussions people come away thinking that bracing has some inherent risk of overtreatment. It doesn't. The risk of overtreatment is completely dependent on the risk of progression at the time you start *any* treatment. It has nothing, whatsoever, to do with the treatment you choose.

Because doctors consider bracing safer than surgery, it's prescribed for lower curves then surgery. That's the only reason it's more associated with overtreatment. Doctors are deciding that the risk of overtreatment is worth it because the treatment (bracing) is considered safe and the thing they're trying to avoid (surgery) is not considered to be nearly as safe.

[Pooka1]

The over-treatment rate is a very small number in JIS cases. These points are nearly irrelevant to reality.

This reminds me of a colleague who was studying some micro-organisms and found a small percent difference in some small aspect within one species and did her entire dissertation on what might have been just noise.

These comments are about the noise.

With JIS, it appears to be a game of what treatment is more successful with the least hardship.

I say again, devil's advocacy gone too far is not helpful nor responsive.