How tight should a night time brace be?

[mariaf]

it looks like the average curve for the cohort was 30 degrees at the start of the study and 22 degrees two years after they had finished weaning off the brace."

That is in keeping with my thinking that many curves will respond similarly to bracing or VBS. Patients who started out with a 30 degree curve generally did great with VBS (most probably correcting to less than 22 degrees).

Also where it states "bracing is highly effective in treating JIS, with most patients achieving a complete curve correction" are they considering 22 degrees complete correction? Don't get me wrong, if a child can get to skeletal maturity at 22 degrees, I'd be doing the happy dance, but I just wasn't sure if that's what they meant.

Hey, this is all good news. I am rooting for the kids wearing braces as much as anyone - especially since to me it's a tough route to go, especially if the child is going to be braced for years and years. They deserve success!

[hdugger]

I'm sure your observations are correct, but I don't have any way of slotting that into my overall understanding of the two treatments.

The one study on JIS and bracing I found showed very positive results:

http://www.scoliosisjournal.com/content/8/S2/O48
Study includes 113 JIS patients followed to two years past maturity/brace weaning
Using SRS guidelines for classifying curve correction and stabilization, 78% showed curve correction, 16% showed curve stabilization, 6% advanced. In total, 5% went on to surgery.
I don't know the protocol for bracing in this study, but it looks like the average curve for the cohort was 30 degrees at the start of the study and 22 degrees two years after they had finished weaning off the brace.

So, it may well be that the 5% who went on to surgery after bracing would have been more responsive to VBS, but I don't have any way of teasing that out of the data.

Here's the conclusion from the study: "Our study confirmed that conservative treatment with bracing is highly effective in treating JIS, with most patients achieving a complete curve correction and only 4.9% of patients requiring surgery. In addition, the study confirmed that full-time bracing and patient compliance is essential to obtaining positive results. "

[mariaf]

That's the thing that the narrow protocol for VBS makes it impossible for me to compare. Your son (thankfully) was successful with VBS, but many other kids with curves over 35 degrees did progress after VBS. Is the progression rate for VBS vs bracing better when you just look at kids over 35 degrees? I seem to remember the opposite - that bracing was more effective with these kids with bigger curves, but I no longer remember the numbers. And I just don't have a comparable study for bracing where we only look at small, flexible curves in young kids. So, I can't make a 1 to 1 comparison about risk of progression between the two. I'm hoping that will become clear in later studies.

My understanding is actually the opposite - that those with curves that did not respond well to VBS also didn't do well with bracing. My personal belief is that often an aggressive curve is an aggressive curve, regardless of the treatment. Same with more cooperative curves.

I also know kids who were progressing despite bracing (some up to 35 degrees or maybe even 40 in some cases), but responded well to VBS.

In my son's case, the brace was pretty much holding him at 40 (at the time anyway), but it was only after VBS that his curve was reduced. In my heart, I don't think the brace would have held him all these years through so much growth but we'll never know for sure.

To me, I don't see how an external brace can be as effective as VBS. Even in the best of circumstances, if the brace is worn 23 hours a day and fits perfectly, I can't in my head imagine it working as well (maybe that's just me). And I think that assuming full compliance (23 hours a day, every day) and a perfectly fitting brace is quite a lot to hope for.

[hdugger]

The other thing is - for some kids it's not only a choice of wearing a brace full time or VBS - it's also a choice of wearing a brace full time (and then needing fusion anyway) vs. VBS. .

That's the thing that the narrow protocol for VBS makes it impossible for me to compare. Your son (thankfully) was successful with VBS, but many other kids with curves over 35 degrees did progress after VBS. Is the progression rate for VBS vs bracing better when you just look at kids over 35 degrees? I seem to remember the opposite - that bracing was more effective with these kids with bigger curves, but I no longer remember the numbers. And I just don't have a comparable study for bracing where we only look at small, flexible curves in young kids. So, I can't make a 1 to 1 comparison about risk of progression between the two. I'm hoping that will become clear in later studies.

[mariaf]

Yes, that makes sense.

I actually agree about full time bracing for younger kids. That's just a very long time to have to wear a brace (all day for many years). I understand making a choice to wear a brace full time against the possibility of growing rods (which, frankly, scare the heebie jeebies out of me), but I agree that VBS seems far easier to tolerate.

I am really rooting for these kids. I know I'm cautious about the long term of VBS, but that is just because the data isn't there. I would very much like it to work, and I am very hopeful that it will.

It's understandable to be cautious. It would be foolish not to be. Thankfully, with VBS it has been so far, so good - hopefully that continues.

The other thing is - for some kids it's not only a choice of wearing a brace full time or VBS - it's also a choice of wearing a brace full time (and then needing fusion anyway) vs. VBS.

My son would fall into that category. He was not even 6 years old with a 40 degree curve and would almost certainly have required growing rods and/or fusion somewhere along the line were it not for VBS. So for us (and other families with kids falling into this category) it was a no brainer.

Same goes for those trying tethering. Most of these patients would almost certainly need fusion otherwise.

[hdugger]

Hope that make sense.

p.s. I think that VBS (even with a night brace afterwards) may be more appealling to many patients than full-time bracing. It's all about giving parents/patients more alternatives to choose from. What's the right choice for one family may not be right for another family.

Yes, that makes sense.

I actually agree about full time bracing for younger kids. That's just a very long time to have to wear a brace (all day for many years). I understand making a choice to wear a brace full time against the possibility of growing rods (which, frankly, scare the heebie jeebies out of me), but I agree that VBS seems far easier to tolerate.

I am really rooting for these kids. I know I'm cautious about the long term of VBS, but that is just because the data isn't there. I would very much like it to work, and I am very hopeful that it will.

[mariaf]

You are certainly more well-reseached and informed with regard to VBS than most, HD!

I am impressed :-)

Dr. Betz doesn't use growing rods as far as I know (but I assume this was from an insurance carrier and I'm guessing other doctors do. Perhaps those who aren't able to perform tethering).

But Dr. Betz will add a nighttime brace in some cases. Many of these kids had VBS before they figured out about the 35 degree threshhold. What Betz told me is that if a curve does not correct to below 20 degrees, he may recommend a nightbrace to achieve more correction (depends on the case as well). So it's all part of their discovery that VBS alone may not work for a lot of kids with curves above 35 degrees before surgery, which is the category many of the kids who don't correct to below 20 degrees fall into. So it's more about the curve size before surgery. Most kids who start off in the high 20's or low 30's end up correcting to under 20 degrees so they don't fall into that category.

Hope that make sense.

p.s. I think that VBS (even with a night brace afterwards) may be more appealling to many patients than full-time bracing. It's all about giving parents/patients more alternatives to choose from. What's the right choice for one family may not be right for another family.

[hdugger]

Anyway, you're right that it may never be a totally equal comparison (bracing vs. VBS) but I guess that has to be secondary to what's best for the kids, so we may never know exactly how they stack up.

Yes, absolutely. I was just making side note about comparing the two. But I think Betz is absolutely right is being so strict. Again, I have huge respect for the man - if he can keep these little kids from progressing to fusion or needing growing rods, he's done a great thing in the world of scoliosis.

On the after-procedure correction: So, I see one reference to the after-surgery number in the insurance papers, but I thought I had also seen it as a protocol. Without finding that, let me modify it to what I now find.

"The authors now use additional treatments such as growing rods or nighttime braces for curves that are greater than 35 degrees at baseline or that cannot be corrected to less than20 degrees on first standing radiograph" (my emphasis, from the Blue Cross report I quoted before)

So, if the curve does not correct to less than 20 degrees *after* VBS, then it appears that they don't think the treatment will be successful by itself and they add something else (brace or growing rods).

[mariaf]

The only point about Betz' strict control on the protocol of VBS is that it makes it very hard to compare VBS to bracing in these kids. The VBS protocol is *very* narrow - in his research, he not only excludes kids whose initial curve is too large, he also excludes kids whose curve *after* the surgery is too large. And he has some other requirements about flexibility and obviously the age and remaining growth requirement.

Hi HD,

I'm not sure what you mean when you say he excludes kids whose curve *after* the surgery is too large. Can you explain - maybe I am missing something. Thanks.

And yes, flexibility, age and remaining growth are definitely taken into account.

I get your point about it being tough to compare bracing and VBS in this regard. I guess the difference is if you brace a child and it doesn't work because of inflexibility, size of curve, whatever, and you knew going in that the chances for success were slim, that's one thing. But to put a child under anesthesia and put them on the operating table under those same conditions is something totally different.

I guess what Betz is trying to do is avoid putting a child through VBS surgery, only to have it fail and then, say, put them through fusion surgery anyway. The good news is that for many of these patients, tethering can be an option. And while it is quite new, the results so far have been very promising. And the thing is, for these kids (some with curves in the mid-upper 40's), it's their last chance to avoid fusion.

Anyway, you're right that it may never be a totally equal comparison (bracing vs. VBS) but I guess that has to be secondary to what's best for the kids, so we may never know exactly how they stack up.

[flerc]

I'm not assuming nothing about Betz. I'm only analyzing what Mariaf said: 'The criteria for VBS has gotten much stricter than it was, say, in 2002. This is a good thing because knowing what they know today (after compiling and analyzing the data that has been gathered over the past decade), if a patient is accepted as a candidate for VBS, there is an excellent chance it will be successful'. So, patients with not an excelent chance, only an acceptable/reasonable/not very low chance are excluded.

[hdugger]

The only point about Betz' strict control on the protocol of VBS is that it makes it very hard to compare VBS to bracing in these kids. The VBS protocol is *very* narrow - in his research, he not only excludes kids whose initial curve is too large, he also excludes kids whose curve *after* the surgery is too large. And he has some other requirements about flexibility and obviously the age and remaining growth requirement.

If you only estimated brace effectiveness using exactly the same very narrow protocol (including tossing out kids whose in-brace correction was too low) it would certainly increase bracing effectiveness numbers in this population. So, while I think what Betz is doing is fine for VBS, it does make it impossible to compare VBS to bracing (which has a far broader protocol).

[mariaf]

Betz works for a non-profit (Shriners). I'm assuming that means that he's paid a flat salary regardless of how many surgeries he performs. Even were that not the case, he'd be likely to make much more money off something like growth rods (repeated surgery) then off VBS, which is one short surgery. I'm also assuming (again, maybe incorrectly) that he could rake in a lot more money by opening up a private practice.

Unless he has some deal with Medtronic on the staples (which I have no reason to believe is the case) then he's has no financial incentive to market this method.

Overall, I really have the feeling that Betz just finds the alternatives for these young kids unacceptable - the growing rods are fraught with complications - and I think that's motivated him to try to find something safer. Could he have a financial motive? I suppose he could, but nothing about him and his work suggests that he's doing anything other than trying to help these kids whose other options are pretty heart-breaking.

Yes, HD - All surgeons at Shriners are paid a flat salary regardless of how many surgeries they perform.

The way you described Dr. Betz, I would think you knew the man :-)

I have known him for a decade and what your wrote is spot on!

I understand when flerc and others question the motives of doctors in general. They are like any other profession - you will find the good, the bad and those that fall somewhere in between.

But Dr. Betz is one of a kind. He really cares about these kids. He doesn't care if he has to refer a child to a colleague. It's not about numbers for him - it's about the kids. A few years ago, the wait for surgery at Shrines in Philly was very long (before they opened a third OR), and he was referring kids to other doctors he knew and trusted (both in and out of the Shriners system) if he thought that those kids could not wait for surgery. He is extremely well respected by his colleagues, his patients and their families - and with good reason.

[hdugger]

(good marketing).

Betz works for a non-profit (Shriners). I'm assuming that means that he's paid a flat salary regardless of how many surgeries he performs. Even were that not the case, he'd be likely to make much more money off something like growth rods (repeated surgery) then off VBS, which is one short surgery. I'm also assuming (again, maybe incorrectly) that he could rake in a lot more money by opening up a private practice.

Unless he has some deal with Medtronic on the staples (which I have no reason to believe is the case) then he's has no financial incentive to market this method.

Overall, I really have the feeling that Betz just finds the alternatives for these young kids unacceptable - the growing rods are fraught with complications - and I think that's motivated him to try to find something safer. Could he have a financial motive? I suppose he could, but nothing about him and his work suggests that he's doing anything other than trying to help these kids whose other options are pretty heart-breaking.

[mariaf]

So, they excludes kids with no so high chances knowing that anyway it might works!.
I know some proffesionals selects their patients in order to have the better succesful statistic (good marketing), not because they think in risks or other better options for those excluded cases.

No, they would exclude kids (or at least try to discourage them) if they thought the surgery would not work for them.

Maybe we are having a language issue, but if a doctor told you that they were pretty sure a particular surgery would not help your child, would you have your child placed on the operating table anyway and put them through surgery? It just doesn't make sense.

[flerc]

So, they excludes kids with no so high chances knowing that anyway it might works!.
I know some proffesionals selects their patients in order to have the better succesful statistic (good marketing), not because they think in risks or other better options for those excluded cases.