SOSORT Lyon 2009

[Pooka1]

And at least it is being studied. That's more than can be said of any number of "orphan" diseases.

So that's in the plus column.

[Ballet Mom]

Concerned Dad,

No, I didn't run from the doctor because of the genetic testing, when he told me that he would be one of the first doctor's to receive the test, I actually was very interested to find out if genetics was involved in my daughter's case and continued to see him for a while after that. I really liked him.

Unfortunately, I was very concerned about that lower curve progressing in the Charleston brace, which, from my internet research, is known to do that in some cases. When I realized that he hadn't given us the lower curve's size at our last appointment with him, I called back to ask...because I was willing to try and get her in a different brace if we could to try to stop that lower curve. (Note that he wasn't the doctor who prescribed the Charleston, I had left the initial doctor because when he started talking about possible surgery, I knew I had to find a doctor who accepted my insurance plan, the first one didn't).

The physician's assistant called me back and told me that the doctor was beginning to believe in the genetic progression of curves and he wouldn't recommend a new brace anyway. So it could have been just that he didn't want to prescribe a brace less than a year after her first brace, or that he felt I was just being a nervous mom and the brace was working, or it could be that he just sees so many of the most difficult cases that most of them don't work with braces. In fact, the surgeon I am going to presently knows the prior surgeon and didn't believe me when I told him that he might not prescribe a new brace for my daughter when she needed it. : ) He told me I was a type A personality...heh...(which actually I'm not, just when my daughter's health is on the line).

I then called the maker of the Providence brace to find a doctor who prescribed it, but there was no one in this area who did. So I called my orthotist and he recommended the doctor we're seeing now. He has a co-worker who hand makes a brace similar to the providence that is apparently doing really well for this doctor. My daughter has actually just received this brace, but not due to her second curve, as that had actually noticeably reduced in size, but because she had outgrown the Charleston.

[Ballet Mom]

So as not to depress everybody about the bracing situation, I thought I'd share a link from the bio page of a doctor at UC Irvine and what it says (which I found on my massive hunt for scoliosis info):

"His discovery of the mechanical cause of adolescent scoliosis promises to eventually (not for a few years yet) eliminate the need to fuse teenage spines for routine scoliosis. This model suggests that bracing in this type of scoliosis may do more harm than good".

http://www.ucirvineorthopaedicsurger...y/kiester.html

So hopefully in some years time, they will have an alternative to bracing for these kids...I certainly hope so. Hopefully discoveries are continuing to march on, and there will be a radical change in the way scoliosis is treated. I'm certainly keeping my fingers crossed. If anyone knows anything about this research, please post, I'd be interested to find out more about it!

[Pooka1]

This model suggests that bracing in this type of scoliosis may do more harm than good".

I can believe that!

My kid was stable for 6 months prior to getting the Charleston. Her curve increased 8*(!) in the first six months of wearing the brace.

Luckily, it was stable during the next 6 month period. But if I wasn't so grounded by the cool, calm, nuanced posts of CD, I might have flown off the handle at the loss of stability after getting the brace. It was an effort not to take the brace out in the back and shoot it.

Calmer heads...

[concerned dad]

On second thought

[Ballet Mom]

I'm hoping that this very intelligent man has been given a divine purpose to solve some of these spinal problems...he certainly sounds like the guy who could do it. Let's all hope so for our kids sakes. I don't think Christianity rests one way or the other on the Big Bang Theory in my view.

By the way, CD, if you are seeing my daughter's prior surgeon, I think you're in good hands since you're not sure you want to brace or not. I was sure. And anyway, his physician's assistant could have said something that didn't necessarily reflect the surgeon's position.

[concerned dad]

Of course, you are correct Ballet Mom.

[Ballet Mom]

CD, here's an interesting article...

http://innovation.freedomblogging.co...ech-tools/685/

Hopefully, if these brilliant rocket scientists were able to send us to the moon and back with all those forces, finding out about the forces on a spine might just be a walk in the park comparatively... Here's to hopefully good news in the future, in all sorts of medical fields.

[Pooka1]

But the weight of evidence suggests that braces, although unpleasant will help many kids.

troublingly inconsistent bracing results

Surgical rates after observation and bracing for adolescent idiopathic scoliosis: an evidence-based review.

Dolan LA, Weinstein SL.

Department of Orthopaedics and, Rehabilitation, University of Iowa Healthcare, Iowa City, IA, USA. lori-dolan@uiowa.edu

STUDY DESIGN.: Systematic review of clinical studies. OBJECTIVES.: To develop a pooled estimate of the prevalence of surgery after observation and after brace treatment in patients with adolescent idiopathic scoliosis (AIS). SUMMARY OF BACKGROUND DATA.: Critical analysis of the studies evaluating bracing in AIS yields limited evidence concerning the effect of TLSOs on curve progression, rate of surgery, and the burden of suffering associated with AIS. Many patients choose bracing without an evidence-based estimate of their risk of surgery relative to no treatment. Therefore, such an estimate is needed to promote informed decision-making. METHODS.: Multiple electronic databases were searched using the key words "adolescent idiopathic scoliosis," "observation," "orthotics," "surgery," and "bracing." The search was limited to the English language. Studies were included if observation or a TLSO was evaluated and if the sample closely matched the current indications for bracing (skeletal immaturity, age <15 years, Cobb angle between 20 degrees and 45 degrees ). One reviewer (L.A.D) selected the articles and abstracted the data, including research design, type of brace, minimum follow-up, and surgical rate. Additional data concerning inclusion criteria and risk factors for surgery included gender, Risser, age and Cobb angle at brace initiation, curve type, and dose (hours of recommended brace wear). RESULTS.: Eighteen studies were included (observation = 3, bracing = 15). All were Level III or IV clinical series. Despite some uniformity in surgical indications, the surgical rates were extremely variable, ranging from 1 surgery of 72 patients (1%) to 51 of 120 patients (43%) after bracing, and from 2 surgeries of 15 patients (13%) to 18 of 47 patients (28%) after observation. When pooled, the bracing surgical rate was 23% compared with 22% in the observation group. Pooled estimates for surgical rate by type of brace, curve type, Cobb angle, Risser sign, and dose were also calculated. CONCLUSION.: Comparing the pooled rates for these two interventions shows no clear advantage of either approach. Based on the evidence presented here, one cannot recommend one approach over the other to prevent the need for surgery in AIS. This recommendation carries a grade of D, indicating that the use of bracing relative to observation is supported by "troublingly inconsistent or inconclusive studies of any level." The decision to brace for AIS is often difficult for clinicians and families. An evidence-based estimate of the risk of surgery will provide additional information to use as they weigh the costs and benefits of bracing.

(emphasis added)

[Dingo]

Bracing

Pooka1

Comparing the pooled rates for these two interventions shows no clear advantage of either approach. Based on the evidence presented here, one cannot recommend one approach over the other to prevent the need for surgery in AIS. This recommendation carries a grade of D, indicating that the use of bracing relative to observation is supported by "troublingly inconsistent or inconclusive studies of any level." The decision to brace for AIS is often difficult for clinicians and families. An evidence-based estimate of the risk of surgery will provide additional information to use as they weigh the costs and benefits of bracing.

I happen to believe that bracing (if it's actually used when prescribed) and even exercise can help AIS. However I wouldn't disagree with that paragraph. It's not a slamdunk.

[LindaRacine]

So as not to depress everybody about the bracing situation, I thought I'd share a link from the bio page of a doctor at UC Irvine and what it says (which I found on my massive hunt for scoliosis info):

"His discovery of the mechanical cause of adolescent scoliosis promises to eventually (not for a few years yet) eliminate the need to fuse teenage spines for routine scoliosis. This model suggests that bracing in this type of scoliosis may do more harm than good".

http://www.ucirvineorthopaedicsurger...y/kiester.html

So hopefully in some years time, they will have an alternative to bracing for these kids...I certainly hope so. Hopefully discoveries are continuing to march on, and there will be a radical change in the way scoliosis is treated. I'm certainly keeping my fingers crossed. If anyone knows anything about this research, please post, I'd be interested to find out more about it!

It would be interesting to know in what percentage of cases, his patients are getting worse with bracing. This could just be an issue of using really bad orthotic techniques.

The guy does seem like a mad scientist, and it should be noted that he is not a member of the Scoliosis Research Society.

[Ballet Mom]

Hee hee! Yes, I suppose he could be a mad scientist...hadn't thought about that! I was just assuming that UC Irvine wouldn't be announcing his research on their website if he was.

Don't get me wrong, I am VERY pro-bracing...everytime I hear someone saying that bracing doesn't work, it upsets me because my daughter has had wonderful results from the school screening program and her bracing, and I hate to think of anyone being convinced not to try the bracing because it may very well work for their son or daughter. And it has not been a problem for my daughter at all to wear her brace at night. It has really been a small sacrifice.

I hate to think if they don't find a significant result on this Braist study, that funding will be shifted to fight obesity in kids...who should just learn not to eat fries and drink sodas. Then so many kids like my daughter won't have the chance to have successful bracing results and avoid surgery and the possible long-term risks in addition to just the regular risks in major surgery (and no possible professional ballet career due to a fused spine). And the awesome technology of these braces will be lost as the brace manufacturers go out of business and the orthotists no longer study scoliosis bracing.

I was simply more interested in the possible avoidance of fusion surgery in the future for AIS suggested by this doctor, and figured someone would call me out if I didn't quote the rest of the sentence about the possible damage caused by the brace.

I would definitely love to know more about his research.

[mamamax]

Hi Mamamax
I am able to open the Kyphosis: Physiotherapy & bracing file.
Try this: Click on the link on the SOSORT site. When the pop up asks "Do you want to Open or Save this file?", choose "Save".
Then go to where you saved the download on your computer and double click on the Zip folder - inside that folder will be an excel document. I was able to open the excel document by double clicking from there.
The document seems to have multiple tabs that give the results of how different health care professionals answered a bunch of questions related to physiotherapy & bracing.
If you don't have Microsoft Excel, then I'm not sure how you can open the file but then hopefully someone else will know how.
Good luck!

Excellent instructions - got it & thanks much swimmergirlsmom!

[concerned dad]

Well, I think I discovered what it is this fellow discovered.


Fusion Cage

And I recalled reading about them in a paper in SPine earlier this year where the author was calling for changes in the Spine Surgery approach to medical devices. The paper is "Is the Spine Field a Mine Field?".
I mentioned this paper in another post here.

Table 1 is attached and the text relative to the fusion cage is below:

Stand-alone interbody fusion cages - Approved based solely on case series. Nonindustry-sponsored studies showed less favorable results than industry-sponsored case series.62 Never proven superior to other treatments in RCTs. Described by president of 1 spine society as prompting a “fusion cage explosion,” but “4 yr later, the efficacy of these stand-alone devices is very questionable.”63

Just because this author criticizes it, doesnt mean it is necessarily bad. I just wanted to find out what this guy was on to. Pretty sure this is what is referred to on the university website.

[concerned dad]

Don't get me wrong, I am VERY pro-bracing...everytime I hear someone saying that bracing doesn't work, it upsets me because my daughter has had wonderful results from the school screening program and her bracing, and I hate to think of anyone being convinced not to try the bracing because it may very well work for their son or daughter. And it has not been a problem for my daughter at all to wear her brace at night. It has really been a small sacrifice.

Ballet Mom, your post got me thinking. I am glad your daughter has had good results. If we were going to brace our daughter (if she were younger), we would choose a night brace too.
But, I wanted to respond to address something you said.
Nobody has said bracing doesnt work. The only time I've heard a statement close to this is related to Adult Bracing.
I am glad we moved this discussion to the research forum because I would NOT want a kid to have the impression that we are saying bracing doesnt work. We should all be careful and watch our words. I am not sure why Ballet Mom got this impression.
Some of us say "We dont KNOW if bracing works" Big difference, but perhaps subtle.

I hate to think if they don't find a significant result on this Braist study, that funding will be shifted to fight obesity in kids...who should just learn not to eat fries and drink sodas.

If they dont find significance in their results it will be a shame because the question will remain open.

You might be interested to read Lori Dolans comments on the other forum here

It is a shame they are not using other braces too. This Braist study will only address the effect of a Boston Brace on Surgical rates. But, they will be lucky if they get enough participants to get significance in their results with even this one brace.

Then so many kids like my daughter won't have the chance to have successful bracing results and avoid surgery and the possible long-term risks in addition to just the regular risks in major surgery (and no possible professional ballet career due to a fused spine). And the awesome technology of these braces will be lost as the brace manufacturers go out of business and the orthotists no longer study scoliosis bracing.

In my opinion, I would guess the results will suggest WHEN bracing would be effective. And for WHAT type and AMPLITUDE of curves perhaps. But, in the unlikely event that the results show it is NEVER effective, well, brace manufacturers shouldnt be selling them.

The whole issue about school screening seems somewhat political. I'm not sure what to think about it. My daughter's 38 degree curve was missed by a school screening completed just 2 months before her diagnosis. As a society we need to determine if school screening is the best approach. Maybe it is, I dunno.

I was simply more interested in the possible avoidance of fusion surgery in the future for AIS suggested by this doctor, and figured someone would call me out if I didn't quote the rest of the sentence about the possible damage caused by the brace.

I would definitely love to know more about his research.

It looks like this doctor wasnt talking about avoiding surgery, just fusion surgery. It would be interesting to know why his research into the 3-d aspect of scoliosis suggests to him bracing can cause harm I didnt see any papers to this effect in his CV. Maybe he was one of the two doctors whose responses were ignored in the Equipoise paper (Two guys predicted worse outcomes after bracing for ALL posited scenarios - their responses were excluded because it was assumed they didnt understand the questions).