The ethics of bracing (and PT) with a Scoliscore <41

[Ballet Mom]

Sure, here's one - http://www.youtube.com/watch?v=FnxYxPk3b58

It's all over the web (again, one of those things that makes me cringe about entrepreneurship in medicine). Googling on Isabelle and Scoliscore brings up about 8 pages worth of entries, most of them separate postings of this video.

Thanks hdugger....I was googling Scoliscore and Lonner and couldn't come up with anything.

Isabelle had a 20 degree curve when she was diagnosed. They then watched and waited to see if she progressed, which she did. It looks to me that she couldn't possibly be over thirty degrees in the final portion of that video.

So, she has many family members with scoliosis, she has a progressive curve with probably a lot of growing to do and she is now unbraced. I hope we get follow-up as to the results of her Scoliscore journey. That would be the fair thing for Johnson & Johnson to show and place all over the net, wouldn't it?

[Ballet Mom]

I had the sense, and it may be completely wrong, that VBS was preferentially offered to the JIS crowd. If that's true at all, then the Scoliscore test isn't going to affect that, since it has only been tested in the AIS population.

I do wonder, in a kind of early morning not enough coffee way, if the Scoliscore is measuring, in part, a receptiveness to bracing. Are the low risk kids unlikely to progress with no treatment? Or, since it was a retrospective study, are they just the kids who are most likely to respond to brace treatment. And, conversely, are the high risk kids the ones who are most likely to not respond to brace treatment (that is, not because they have aggressive curves, but because something in their curve growth makes bracing fail.)

This is just a thought experiment - there's no data one way or the other, as far as I know. But it does seem possible that Scoliscore is measuring something other than just likelihood of progression outside of any treatment protocol.

No, VBS is offered to AIS patients also. And I have read that Scoliscore is actually trying to make it's test available to the juvenile population also.

I personally think the most interesting thing this test shows is that the environmental influence on scoliosis is quite large.

[Ballet Mom]

Isabelle had a 20 degree curve when she was diagnosed. They then watched and waited to see if she progressed, which she did. It looks to me that she couldn't possibly be over thirty degrees in the final portion of that video.

So, she has many family members with scoliosis, she has a progressive curve with probably a lot of growing to do and she is now unbraced. I hope we get follow-up as to the results of her Scoliscore journey. That would be the fair thing for Johnson & Johnson to show and place all over the net, wouldn't it?

I suppose this girl could be post-menarchal too, so perhaps she wouldn't be as high-risk as others, we don't know that important fact. We also don't know the big increase in the curve that she had, it could be 2 degrees for all we know, well within the measuring error range.

I think it's interesting in this article http://www.nytimes.com/2010/08/10/health/10brod.html , that it sounds like the girl was wearing a brace, and yet the x-ray shown is 8 degrees. When I first read that article, I assumed they had attached the incorrect x-ray to the article. Now, I believe that there's one heck of a lot of hype going on. Who would be bracing an 8* AIS curve?

It's the missing information in these articles that's important.

[hdugger]

I *think* that's a stock photo. It's tagged "Getty Images," which is a supplier of stock photos.

Edit: Yeah, I just looked it up on the Getty Images site. Defintately doesn't have to do with this article - it says it's a stock photo of a boy's back.

[mariaf]

I had the sense, and it may be completely wrong, that VBS was preferentially offered to the JIS crowd. If that's true at all, then the Scoliscore test isn't going to affect that, since it has only been tested in the AIS population.

You are not wrong, hdugger. In fact, you raise a good point.

The truth is, VBS is offered to the JIS crowd much more often than to the AIS crowd simply by virtue of the fact that one of the main criteria is that there must be 'significant growth remaining'.

From talking to Dr. Betz and others, I can tell you that they view the ideal candidate as someone MUCH more likely to be part of the JIS crowd than the AIS crowd so I agree with you about the Scoliscore test not having as much of an effect as people might think, in terms of VBS.

[mariaf]

[QUOTE=Ballet Mom;115059]No, VBS is offered to AIS patients also./QUOTE]

In a few cases, that's true - but VBS is generally geared towards patients with 'significant growth remaining'. Therefore, AIS patients would be MUCH less likely to fit the criteria for VBS than JIS patients.

[Pooka1]

Also, in the event of any VBS waiting list which I am gathering is not uncommon, the JIS cases should go to the front because they have fewer options and the prognosis on average is worse than for AIS. After that, I would push the lumbar AIS cases ahead.

Just my little lay opinion.

[mariaf]

Also, in the event of any VBS waiting list which I am gathering is not uncommon, the JIS cases should go to the front because they have fewer options and the prognosis on average is worse than for AIS. After that, I would push the lumbar AIS cases ahead.

Just my little lay opinion.

That's a great example, Sharon, of all the things that are taken into account when the doctors make decisions about who is a VBS candidate and who isn't', which cases are given top priority, etc.

There is so much that is assumed about VBS, that isn't necessarily true, but people sometimes jump to conclusions. As you know, VBS is not cut and dry. It is for a select group of patients who meet certain criteria. And since the docs have tightened the criteria to include only this select group of patients (including those with significant growth left, among other things), those who are approved for VBS have had very good success rates. I would venture to say much higher than that of bracing.

But then, nodoby knows the success rate of bracing with any certainty, do they? :-)

[Pooka1]

But then, nodoby knows the success rate of bracing with any certainty, do they? :-)

I think it is often quoted on this forum as elebenty million percent.

As far as I can tell, the most defensible figure can be no higher than 10% and that is only the "success" evaluated at the point of maturity. Maybe these 10% are the exact ones who progress later in life. Maybe the 70% who were apparently needlessly braced are the ones who do not progress later. Maybe it a mixture. Who knows.

Maybe Scoliscore can shed some light on this question. Maybe not. Who knows.

[KJD]

Omg your kidding

And yet again with personal attacks and putting words in people's mouths. Who said that you surgeon bash? Or that Sharon thinks bracing is unbearable?

Please try to stick to the facts without making it personal. You may not like some of us, or our opinions, but please try to keep those sentiments out of your posts, as they really have no place there and they add nothing to the discussion.

I could not help but respond to this... the "Or that Sharon thinks bracing is unbearable", I don't know how many times I have read that EXACT STATEMENT in one of her posts and cringed about it since my daughter is in a brace and we are trying the ... OMG... conservative treatment ... how dare we since there is no SOLID... CONCRETE proof that anything conservative works 100% of the time for all kids of ALL curve sizes... lol

oh but wait... surgery does not work 100% of the time either... or nobody would ever have a second surgery. somehow, curves continue to progress, a percentage of people who have had the surgery later in life are in great pain... oh how is that different from conservative treatment????

[hdugger]

It's fairly easy to prove that surgery reduces curves - you go in in the morning with a curve of one size and you come out in the evening with a curve of less size. So, that makes the research pretty simple.

But, because the natural progression of curves is unpredictable, it is much harder to show that a treatment keeps a curve from progressing. That has nothing whatsoever to do with how effective bracing is or is not - it's simply a limitation of research in this particular area. No matter what the treatment is and no matter how effective it is, it would still be very hard to prove that it worked.

That leaves me to rely on surgeons to make sense of what they've seen and, in general, the majority of surgeons tend to feel that bracing works. Since that's the only data of any value I have, I also tend to believe that bracing works. I mean, I'm trusting these guys with my kids' spine - I have to believe in their ability to make sense of what they see.

Best of luck to your daughter. I think we all hope that every kid manages to avoid the surgery.

[mamandcrm]

I don't have the impression that VBS is preferrentially offered to JIS patients. That might make sense from a cold clinical perspective, but I don't think that is how it works. I think it is the opposite; i.e., that it is offered on as "as available" basis (both with respect to surgeon and patient) to children who are viable candidates and more at risk to progress more rapidly to fusion, which more often is an AIS patient (10 and up). I may be wrong about that but that was my distinct impression while we were going through the process. And I don't necessarily think that is the wrong approach, and I am the mother of a JIS kid. If you are looking at a 25* JIS kid and a 35* AIS kid and you can only choose one for surgery, you probably should choose the latter, and send the JIS kid to bracing, with the idea that the JIS child may have a bit of time to play with. It's not a perfect system, obviously, but you work with your resources you have.

[mariaf]

One of the major criteria for VBS candidacy has always been 'significant growth remaining'. So one could draw the conclusion then, that it would be geared to JIS patients, but also to some AIS cases (10 years old and up) where the patient has significant growth remaining.

There are also a host of other factors that are taken into consideration and each case is looked at individually.

As for comparing a JIS case at 25 degrees and an AIS case at 35 degrees, I can definitely see your point about the AIS case running out of options. That said, however, very often the 35 degree AIS case is turned away for VBS because, to the doctors' credit, if they don't feel that there is a very good chance of success they will not perform the surgery.

One of the things they found after reviewing nearly a decade of research is that curves under 35 degrees respond more favorably, in general, to VBS - and also that, as originally thought, significant growth remaining was also necessary for success.

[Pooka1]

I just have a thought question...

If you can't get some kids to wear a hard brace the prescribed number of hours to avoid surgery, what are the chances they will wear the brace if they know they will be sub-sugical at maturity? And they know there is no evidence that bracing can keep sub-surgical curves even more sub-surgical?

I suggest the chances are low.

PT is a bit different if the kid is willing though the evidence case should be made clear to the kid. As for bracing, apparently you can't get some kids to stick with it even to avoid surgery so how can you get them to stick with it if they have a Scoilscore of <41?

I'd like to know the outcome of the group with a score of <41. Maybe 99% are below 30* at maturity. To read this group, there is a casual, often unstated, assumption that most of these kids are measuring 39.999* at maturity. That can't be correct.

[mariaf]

You make some good points about compliance, Sharon.

Having a strong-willed (understatement) teenage daughter myself, I would certainly agree that for some kids there is NOTHING one can do to force brace compliance.

I even heard of one high school girl who would leave the house with her brace on, ditch it in the bushes outside her house, and put it back on before returning home.

Of course, the flip side is that you will also find kids willing to be compliant, whether it is in the hopes of avoiding surgery or just because they are less defiant by nature :-)