SOSORT Lyon 2009

[Pooka1]

CD, excellent analysis, as always.

I associate myself with your remarks.

[PNUTTRO]

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.

My 48 degree curve developed over a period of less than 4 months. At the time, I was told that my only option was surgery and my mother agreed. Screening probably catches more cases than it misses.

[Ballet Mom]

Wow, good research CD! Although I think that the cage sounds like it pertains to fusion surgery, not to non-fusion surgery. I was more interested in the potential fusionless future for AIS treatment. And yes, I know that it sounds like his fusionless remedy probably includes surgery. At least he doesn’t sound like a quack to me.

I have read this scoliosis forum quite closely over the past year plus, and I have to disagree that there is no one saying that bracing doesn’t work. Occasionally, as an afterthought, a comment gets thrown in that no one has “proven” bracing works or not, but surgery as a “cure” is certainly being promoted in quite a flippant manner. And it saddens me to think that people are not using or possibly abandoning their braces due to this cavalier attitude (although if I were using the Spinecor brace, and my child was about to hit their peak growth, I might really consider whether to change braces at that point).

Part of the reason I went to the second surgeon, beyond the insurance issue, was the first surgeon had prescribed the Charleston Bending Brace for my daughter. I did not “choose” it, he said it was what he would use if his daughter had scoliosis. But when I told the school nurse on a follow-up call that my daughter was prescribed a Charleston, she immediately said “Oh, those don’t work!” And, in fact, when he turned down the use of the Spinecor, I had started doing additional research and it apparently looked to me like the braces worn all day had a better success rate than the nighttime bracing.

I immediately called my sister who is a very good doctor at a large medical organization, and asked her what to do. She immediately went to the head of the Orthopaedics group and asked him about the Charleston. He replied that they had a cheerleader with the same Cobb angle and same age as my daughter and they had been able to stop the progression with the Charleston. That was it, no data about studies…etc. Just what had worked for him in a similar situation.

So, I of course, putting on my occasional type A personality, decided to research a good doctor and get a second opinion. This second excellent surgeon at the children’s hospital told me that the first surgeon I had gone to was the chief resident at the same hospital when he was a resident there. He then proceeded to tell me that my daughter should never have been prescribed the Charleston brace because she had two curves and the Cobb angle of the larger curve was too large! So there you go, two outstanding surgeons don’t even agree on a specific brace when they were trained together!

When I talked to the orthotist about what the nurse said, he said, oh no Charlestons do work and she was within the prescribed guidelines.

(By the way, our first doctor does more than 350 spinal surgeries per year and does research and is not a member of the Scoliosis Research Society, so as far as I’m concerned, the non-membership doesn’t mean his research and expertise isn’t valid).

[Ballet Mom]

I am of the opinion that just because they won’t get sued out of existence doesn’t mean that surgeons who won’t prescribe bracing are not necessarily negligent. They may just be getting away with it. Scoliosis surgery has many risks associated with it, including an unfortunate result from a surgery being reported right now on that other forum you mentioned CD. I am of the opinion that if the surgery can be avoided at all, within acceptable deformity and pain parameters, it should be. There is some blind faith in science going on here….unfortunately Titanics sometimes sink, and Challengers occasionally explode, not because the designers didn’t have the best of intentions.

Obviously a parent has the right to not brace their child if they don’t want to, which is great, but it should be offered to those who it has a reasonable chance of success with. I think those surgeons who haven’t been successful might want to look harder for the good orthotists. Or perhaps, they’re limited because they see mostly severe cases that won’t respond to bracing in any case.

My sister was quite concerned about my daughter having spinal fusion surgery, she didn’t say not to do it, but she was concerned enough that she wanted to fly in for the surgery and recovery. And just because someone on the forum had a great success with their one child (which I am very happy for her), it doesn’t mean anyone else is going to, including her other daughter. Although I certainly hope she would and the odds have certainly improved in her favor over time.

But to announce many times that surgery is a cure is nonsense…I think I just read in one of the Sosort papers in the link you gave us that surgeons are now becoming concerned with a junctional kyphosis that is now showing up in patients with the firmer spine systems they’re using nowadays. Until they have thirty or forty years of history, they’re not going to know that these systems are any better than the old ones. As ChrisWBS said, it is premature.

So to think that this study is going to solve anything seems somewhat farfetched to me, seeing as everyone involved in this field has a different opinion based on what they’ve seen. It seems it will only prove what has happened with the bracing on that one group of kids in that one study. It won’t even necessarily apply to anyone else. And I would really hate to have one of my grandkids deforming in front of my eyes, if this does turn out to be genetic, and having to fly to Germany in order to get a brace for them. That would be really sad. And I can guarantee you I would do it.

Anyhow, just my amateur viewpoint if anyone has read this far. I’ll get off my soapbox now. Sorry for the very long posts.

[Dingo]

Ballet Mom

Ballet Mom

I wrote you a private message, did you get it?

Thanks!

[concerned dad]

No, dont get off your soapbox. You offer an interesting viewpoint. I may mull it over and offer some comments but I wanted to correct an earlier post.

It looks like the UC Irvine Doctor also invented:
Expandable rod system to treat scoliosis and method of using the same

I didnt read the other Patent enough to understand it but when Ballet Mom said it was still fusion I knew I had to look deeper.

I know I poked fun at this "mad scientist" but I am happy there are people thinking about this stuff.

It is sort of an implantable brace. And it reminds me of a critique I read somewhere about traditional braces. It was something along the lines of comparing:

• a boston brace to treat a curved spine to
• an attempt to straighten teeth by wearing a helmut around your head.

(obviously, you would be better able to control the positions of the teeth by putting the oral braces right on the tooth).

[LindaRacine]

(By the way, our first doctor does more than 350 spinal surgeries per year and does research and is not a member of the Scoliosis Research Society, so as far as I’m concerned, the non-membership doesn’t mean his research and expertise isn’t valid).

Hi Ballet Mom...

While I'm sure there are great doctors who are not members of the SRS, and that there are bad doctors who are, the reason I would choose an SRS professional is that they generally have far more experience with scoliosis issues than non-members. Using anecdotal evidence to make treatment decisions is going to result in bad outcomes more than using the advice of a professional who treats hundreds/thousands, and who keeps up on the research.

Regards,
Linda

[LindaRacine]

But to announce many times that surgery is a cure is nonsense…I think I just read in one of the Sosort papers in the link you gave us that surgeons are now becoming concerned with a junctional kyphosis that is now showing up in patients with the firmer spine systems they’re using nowadays. Until they have thirty or forty years of history, they’re not going to know that these systems are any better than the old ones.

Hi Ballet Mom....

Actually, junctional kyphosis is nothing new. It is often referred to as disc degeneration above a prior fusion.

I totally agree that we're often too cavalier about surgery. It's a big step, and I would want my child to avoid it if at all possible.

Regards,
Linda

[LindaRacine]

It is sort of an implantable brace. And it reminds me of a critique I read somewhere about traditional braces. It was something along the lines of comparing:

• a boston brace to treat a curved spine to
• an attempt to straighten teeth by wearing a helmut around your head.

(obviously, you would be better able to control the positions of the teeth by putting the oral braces right on the tooth).

There's a pretty big difference between bracing teeth (where correction is the goal), and bracing a spine, where halting progression is the goal. With that said, there is plenty of research on stapling, which is being used by some specialists.

--Linda

[Ballet Mom]

Hi Dingo,

I sent you a response in two parts (the file size was too large to send in just one). I don't see how I know whether I sent the messages to you successfully or not, so hopefully you get the two messages.

[Ballet Mom]

Hey CD, thanks for doing a little more research. That internal brace sounds very interesting. I hope it works! Or some variant of it. Time will tell....I'm glad progress is marching on.

[aterry]

I just want to agree with the post that indicated that this site, in general, seems to have an anti-bracing agenda. I'm not as close a reader as some of you are--and I really respect and admire how much time and thought many of you give to your posts. It's not that there are constant, literal, declarations that "bracing does not work". But the aggregate is very, very, anti-bracing. Also anti-exercise; anti-anything-new. The approach that gets the most positive attention is surgery and I don't understand that. The message seems to be: 'surgery is inevitable so don't even consider anything else.' I'm still having nightmares because my daughter's scoliosis was not caught early enough to try bracing. I would give anything to be able to turn the earth backwards (like in Superman I ) and go back in time so we could do bracing. I do not understand why the most primitive and barbaric approach is the most admired, especially when the site is full of posts about problems and complications.

[Pooka1]

I just want to agree with the post that indicated that this site, in general, seems to have an anti-bracing agenda. I'm not as close a reader as some of you are--and I really respect and admire how much time and thought many of you give to your posts. It's not that there are constant, literal, declarations that "bracing does not work". But the aggregate is very, very, anti-bracing. Also anti-exercise; anti-anything-new. The approach that gets the most positive attention is surgery and I don't understand that. The message seems to be: 'surgery is inevitable so don't even consider anything else.' I'm still having nightmares because my daughter's scoliosis was not caught early enough to try bracing. I would give anything to be able to turn the earth backwards (like in Superman I ) and go back in time so we could do bracing. I do not understand why the most primitive and barbaric approach is the most admired, especially when the site is full of posts about problems and complications.

Wow. It's like we are reading entirely different sites.

I would never describe this forum in anything close to the way you did nor would I characterize either bracing or surgery in anything close to the terms you used.

Remarkable.

[Pooka1]

I can give a few examples...

I just want to agree with the post that indicated that this site, in general, seems to have an anti-bracing agenda.

I would characterize it as pro-evidence which equates to the same thing in this case.

I'm not as close a reader as some of you are--and I really respect and admire how much time and thought many of you give to your posts. It's not that there are constant, literal, declarations that "bracing does not work".

We don't know that. Bracing might work. There is simply no good evidence it does.

But the aggregate is very, very, anti-bracing. Also anti-exercise; anti-anything-new.

Again, I would hope this site is pro-evidence. There is nobody criticizes alternative treatments that have evidence of efficacy (if they even exist).

The approach that gets the most positive attention is surgery and I don't understand that.

Because it is the only treatment to date that has been shown to be definitive.

The message seems to be: 'surgery is inevitable so don't even consider anything else.'

Surgery is not inevitable though it is likely in some cases and unlikely on other cases.

I'm still having nightmares because my daughter's scoliosis was not caught early enough to try bracing. I would give anything to be able to turn the earth backwards (like in Superman I ) and go back in time so we could do bracing.

I'm sorry about this.

I do not understand why the most primitive and barbaric approach is the most admired, especially when the site is full of posts about problems and complications.

Surgery, far from being the most primitive and barbaric, is the most technically accomplished treatment. There is a reason orthopedic surgeons are the highest paid specialty.

[LindaRacine]

I just want to agree with the post that indicated that this site, in general, seems to have an anti-bracing agenda.

There are some "anti-bracing" activists who post a lot, but I'm fairly certain that I would describe the National Scoliosis Foundation as pro-bracing.

--Linda