How tight should a night time brace be?

[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]

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]

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]

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]

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]

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?

Yes, I was wondering the same thing myself. I'm still looking for the full text of the article to parse that out. But, given what I do have, I would just state the correction in values - average of 30 down to an average of 22 - and leave out the complete correction phrase until we see the full report.

I agree about the good news. JIS is just so tricky - it's both far more aggressive (I saw one report that said that kids with 30 degree curves were *guaranteed* to progress to fusion, so, again, good for you for pulling your son out of that pool) and far more amenable to treatment. I guess it's just that the curves are so darn flexible that they can (easily) go either way.

[mariaf]

I guess it's just that the curves are so darn flexible that they can (easily) go either way.

I agree that is one factor that makes predicting what is going to happen in a particular case seem like a total crapshoot sometimes.

I've seen cases that *seem* very similar (in terms of curve location/size, flexibility, age of child, etc.) turn out very differently.

Now where is that elusive crystal ball......

[leahdragonfly]

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.

Hi Hdugger,

As Maria pointed out you will never be able to compare bracing to VBS 1:1. The criteria for the two treatments are not the same. VBS targets many JIS kids, who are very high risk for progression, as well as AIS kids who are either high risk for progression or have already failed bracing/progressed in brace. 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.

Bracing criteria are still wide, as is discussed by the authors of Braist. The problem of over-treatment with braces is discussed by the authors, as well as in an editorial that accompanied the original Braist publication last Fall. The reason over treatment with braces is tolerated is because nobody has died from bracing. Nobody has died from VBS either, but we all know surgery and anesthesia always carries some inherent risk. Surgeons who perform VBS are dedicated to making sure no child is subjected to this risk without a full and careful consideration of the options, risks and benefits. I would dearly love to see bracing criteria so strict, because bracing is a difficult treatment for a child to endure. I was braced myself, so I can state that without hesitation, which is not the case for any of the other participants on this thread. I believe bracing can be effective in some cases, but we need to clearly know who actually needs the brace, and who doesn't, because that is an incredibly bitter pill to have a child endure a brace when they really didn't need it.

You mention above that "many kids with curves over 35 degrees have progressed." I know some have and some haven't, being very active in the VBS world for the last 6 years. Can you clarify your basis for this comment and what data you are referring to? I have not seen any specific figures about this other that in Betz's articles.

The Italian JIS study you cite is very interesting, and certainly widely divergent from many other JIS studies (of which there are not many). I was able to get to the full-text of the article with a few clicks from the link you provided, but I did not have time to read the entire thing. There is a small link on the upper right to a full-test PDF. They did not seem to explain themselves very well with their comment about "full resolution."

For our family VBS was the obvious choice. Leah was 6 years old with a 30 degree curve. We were given a 100% chance of her needing fusion, regardless of conservative treatment. The thought of 8-10 years of 23 hr/day bracing, followed by fusion, was unthinkable. 6 years later Leah has a stable, 15 degree curve, so we are entirely thrilled at this point. But every family has to consider their options and circumstances carefully and come to a decision on what is best for their child.

[Pooka1]

The Italian JIS study you cite is very interesting, and certainly widely divergent from many other JIS studies (of which there are not many). I was able to get to the full-text of the article with a few clicks from the link you provided, but I did not have time to read the entire thing. There is a small link on the upper right to a full-test PDF. They did not seem to explain themselves very well with their comment about "full resolution."

"Widely divergent" is an understatement. :-)

That is an oral presentation at a meeting. Let's see if the work gets published in the peer-reviewed literature. As a comparison, that Mayo Clinic work lead by Shaughnessy a few years ago that was Everyone's Favorite Oral Presentation (TM) still isn't published. As I recall there was some issue with data selection but I would have to review it.

[hdugger]

Thanks, Gayle

Bracing criteria are still wide, as is discussed by the authors of Braist. The problem of over-treatment with braces is discussed by the authors, as well as in an editorial that accompanied the original Braist publication last Fall..

Yes, I agree. The number they came up with was that 50% of high risk AIS kids would not progress to surgery even under watch and wait. That's a serious issue with bracing. And anyone with AIS considering bracing has to take into account that they might not progress to surgery, even without a brace. OTOH, if one can tolerate a brace, wearing it full time reduces the risk of progressing to around 10%. So, it's a matter of weighing risk and benefit for every child, without knowing their specific odds.

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. I know it's early in the study of this treatment, and I assume that there will eventually be randomized studies to pin down the risk of overtreatment. But I do accept that overtreatment is possible for all of these treatments. It's just part and parcel of not knowing the risk of an individual child.

BTW, can you share the link for the full PDF of that JIS bracing article? Everything I clicked on just brought up yet another version of the abstract.

You mention above that "many kids with curves over 35 degrees have progressed." I know some have and some haven't, being very active in the VBS world for the last 6 years. Can you clarify your basis for this comment and what data you are referring to? I have not seen any specific figures about this other that in Betz's articles...

Yes, I'm pulling this from Betz. When he first started doing VBS, he did it on a wide range of curves (I think all the way up to 50 degrees). But he later changed his protocol to 35 degrees and under because many more of the kids over that limit progressed then did the kids under that limit.

But every family has to consider their options and circumstances carefully and come to a decision on what is best for their child.

Yes, exactly. Again, I really admire Betz for searching for another option for these young kids. I had a big hairy (but, obviously still adorable) teenager with scoliosis and it broke my heart. I can't imagine how I would have felt if it had hit 10 years earlier. You've done a very good thing by your daughter, IMO.

[hdugger]

As I recall there was some issue with data selection but I would have to review it.

Could you post a link to the source of that statement.

[hdugger]

Everyone's Favorite Oral Presentation (TM) still isn't published.

For those not familiar with Dr. Shaugnessy's presentation, it's here http://posna.gmetonline.com/Presenta...onpackageid=84) - Click on the May 13th presentation link "Bracing for Adolescent Idiopathic Scoliosis: Determinants of Success" presented by William J. Shaughnessy, MD.

I suspect that he didn't set out to do a study - he just noted what happened after they tightened the protocol for bracing at Mayo Clinic. Basically, they went from having a program where a bunch of the braced kids progressed to surgery to one where none of them progressed. Again, this only happened after creating a very tight protocol - I believe they only included kids with curves less than 40 degrees wearing their brace for more than 15 hours a day. So, it didn't point to braces overall effectiveness - it specifically highlighted the point that, with a very specific protocol, one could greatly increase brace effectiveness.

Looking at pub med, Dr. Shaugnessy's is writing very few research articles - he's a practicing physician, and not a full-time researcher, so his priorities are likely not in upping his study count. When he does write articles, he writes across a broad range of topics - the latest article is about the very high rate of complication with pedicle screws used in children under ten. Which is all to say that, professionally, he has lots of things to do besides updating his observations on brace wear at Mayo Clinic. More importantly, the BrAIST study has confirmed his observations with a randomized study - showing that increasing the in-brace time does, indeed, significantly lower the risk of progressing to surgery. So, unless he has a separate finding, it would only emphasize this finding and not increase our overall knowledge about bracing.

[leahdragonfly]

full text article link

Hi hdugger,

here is a link for the (brief) full-text as mentioned up thread. It is actually an oral presentation from SOSORT 2013, not actually a published, peer-reviewed paper as I think Sharon already pointed out. http://www.scoliosisjournal.com/cont...1-8-S2-O48.pdf

I found it rather curious that their reference list only consisted of three articles, including one from the now-defunct and I believe discredited SpineCor people. Again, I can not state strongly enough how difficult it would be for a child to endure 8-10 years in a Milwaukee brace. There is a price to pay for that treatment, even though it is non-surgical.

I can't completely agree with your cautions about potential over treatment with VBS. The children who meet the criteria have curves smaller than at fusion levels, that is true. The Philadelphia Shriner's protocol is 25-35 degrees as far as I know. There are a number of other surgeons who also perform VBS who may have other criteria. Some well-known names include Luhmann, Diab, Vitale, Schwend, Lubicky, Skaggs, Hresko, Asghar, to name a few that easily come to mind. Many readers here do not realize that there are quite a few other surgeons who do VBS besides Shriners Philly. While it is true that on some of these 25-35 degree curves the children do not have documented progression, many of them fall into well-defined risk groups based on previous publication about the natural history of various types of scoliosis. This is true for JIS in particular, which is why I find the article you mention to be far outside the previously published and accepted prognosis for JIS. Take for instance my daughter, where we were given a 100% chance of progressing to fusion. This figure was given to us by three different, independent pediatric orthopedists in Oregon, Philadelphia and St Louis, so we felt quite confident that VBS was the right treatment for her. At some point it is obvious that you are cutting your losses by choosing surgery before a huge, documented progression which would sentence her to a much larger and more serious surgery. In our case Leah was a scant 5 degrees away from being turned down for VBS and having a growth rod recommended, and we all know that 5 degrees is within the margin of error. In my heart I knew that VBS was the right option, without question.

[hdugger]

I can't completely agree with your cautions about potential over treatment with VBS. .

What I'm saying is that the risk of overtreatment is inherent in the population and not in any specific treatment. If, say, 10% of JIS kids between 25 and 35 degrees will not progress, even with no treatment, then you're overtreating 10% of them whether you perform VBS or put them in a brace. That's all - it's a population measure (how many will progress without treatment), not a treatment measure.

Effectiveness is a treatment measure, but over treatment is not.

I'm not gung-ho on brace treatment for these little kids - it's a long time to put up with anything. I'm just saying that, at least from that study, it looked like it might be effective. But it can be effective and still be an unacceptable choice for someone.

[leahdragonfly]

Hi hdugger,

I agree completely about what you said about bracing, that it can be effective and still be intolerable for a child or family. That's why treatment choices are good, because scoliosis is not one size fits all.