How tight should a night time brace be?

[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.

[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.

[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.

[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]

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 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.

[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]

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]

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.

[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]

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.

[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.

[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.

[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......

[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.