SOSORT Lyon 2009

[concerned dad]

Thanks for calmly talking me off the ledge (again).

Check out this video (at least the first 35 seconds)

[Pooka1]

Check out this video (at least the first 35 seconds)

Yes! Exactly how I feel!

[Pooka1]

If you are a participating physician in the Braist study you are not bracing half your patients
(well, less than half because you have patients not participating in the study)
and there are more than a few participating centers.

Plus there are some surgeons who won't brace and therefore can't participate in the study.

I can name one and could have named two until recently.

[concerned dad]

Hi Sharon....

I've not seen evidence of scoliosis specialists not bracing, although I'm sure there are a few. Is there any evidence that there are many?

--Linda

Thinking this over further, I dont believe there are many physicians who dont brace at all (it is possible that Sharons 1 is the only one).

I bet it is more along the lines of some have different criteria for bracing, but I guess we would find very few who NEVER brace under any circumstances.

So, my initial reply to Linda interpreted her question incorrectly. Sure, the Braist guys dont brace SOME patients. I bet ALL SRS doctors have patients they dont brace (ie, curve too small or too big, age too old). The question is though, how many NEVER brace.

Sharon, you imply that there are several with your lawsuit comment. Now I'm wondering along with Linda, just how many?

[Pooka1]

Thinking this over further, I dont believe there are many physicians who dont brace at all (it is possible that Sharons 1 is the only one).

Possible but not very likely that I ran into the only one, yes?

We saw him twice before being referred to the second surgeon. I think both my girls were in bracing range yet we just did observation because he does brace as far as I know. I asked about bracing and he told me there is no good evidence bracing works or he didn't believe bracing works or something along those lines.

And the second surgeon specifically told me he never braced until the recent data on the Charleston. Yet I know from another forum member here that he has prescribed at least one TSLO brace very recently. So I would say he meant he very RARELY braces until recently, too rare to mention. I'm guessing this other forum member was some special/unusual case given his comments about not bracing until recently.

I have gotten the impression he is willing to try with the Charleston because the kids don't have to wear it during the day.

I might buttonhole him in this at the next visit.

[Ballet Mom]

I have had my daughter see three excellent orthopedic surgeons since my daughter was diagnosed. They all come highly credentialed. But I have to say as a parent seeking treatment, you have to be very careful what you say, because the surgeons are listening to what you say and will respond to what your feelings are on bracing. They are trying to help you and your child, and since it’s obviously not a cut and dried outcome on these braces and daytime bracing especially very difficult to use, they will ask you what it is you want to do. I am quite sure that if you show an inclination to not brace, they will use the fact that bracing is not specifically proven to make you feel better about your decision and because I’m sure a child needs the family’s support to successfully use the brace.

I can’t imagine that any attorney would be able to prove negligence what with the data as it stands on reliability of bracing studies. A good attorney for the doctor/hospital could make mincemeat of it. It is unpredictable what is going to happen in any given situation with a brace, the data just isn’t there yet, and maybe never will be. Plus most of these doctors have those lawsuit waivers you must sign initially to be seen anyway.

In fact, the second surgeon I saw is a very respected surgeon at a major children’s hospital and I wouldn’t hesitate, even at this point, to go to him if my daughter needed surgery while she was still within the age range, but his physician’s assistant told me that the doctor was starting to believe that bracing didn’t help, that it was just a genetic determination as to where you would end up. (He is involved with that DNA testing). Now, I don’t buy that from my experience, but if he spends most of his time on the most difficult surgeries, he may not have had the time to find the right orthotists to use to get good brace results. But God bless him that he is able to be the fantastic surgeon that he is and helping out all these really difficult cases. But I ran like heck from him when I heard that and am now seeing another children’s hospital scoliosis director, who was recommended by my daughter’s orthotist, who believes in bracing and is getting very good results with it. Yes, I call lots of people trying to find information. : )

[concerned dad]

Ballet Mom, I'd have to agree with most everything you said.

I guess I'm a bit confused/unclear why you ran like heck from the 2nd doctor? Was it because of the DNA testing or was it because he admitted that he was having second thoughts on bracing efficacy?

It's just that, well, our 4th doctor mentioned the genetic testing thing to us and he also explained that he believes the medical community does Not Know if bracing reduces the need for surgery. He didnt say it didnt, he just said they didnt know.

So, I suppose, we could be seeing the doctor you ran like heck from.

[Pooka1]

I have had my daughter see three excellent orthopedic surgeons since my daughter was diagnosed. They all come highly credentialed. But I have to say as a parent seeking treatment, you have to be very careful what you say, because the surgeons are listening to what you say and will respond to what your feelings are on bracing.

I agree. That's why some folks say that bracing is for the parents so they feel they are doing something.

I came into the first surgeon as a blank slate. I had done nothing at that point by way of research other than I knew about bracing and surgery. I didn't realize there was the third option until he said we would observe the curves and return for new radiographs in 6 months. That was shocking at the time. He said he didn't think there was enough evidence that bracing worked to subject kids to it. I had to take his word on that at the time but have since looked at the literature and realize why he said that.

They are trying to help you and your child, and since it’s obviously not a cut and dried outcome on these braces and daytime bracing especially very difficult to use, they will ask you what it is you want to do. I am quite sure that if you show an inclination to not brace, they will use the fact that bracing is not specifically proven to make you feel better about your decision and because I’m sure a child needs the family’s support to successfully use the brace.

Only people who have looked at the entire bracing literature will have an inclination not to brace. I suggest that is virtually NO parent coming into a surgeon consult for the first time. Most lay people, like me, assume the two options are bracing and surgery, never realizing that the third option exists.

Now the opposite is NOT true... I think PLENTY of parents are unwilling to watch and wait and want to feel like they are doing something, anything. I suggest some kids are braced ENTIRELY for that reason, no other.

By the time we were referred to the second surgeon, I still didn't have a clear idea about what the literature had to say about bracing so I just went along with the Charleston. Since then, I have read up and have told my daughter she can lose the brace if she likes.

If I had known now what I new then, I would be asking several more questions about the Charleston before agreeing to get it and exactly which data changed the surgeon's mind to think it was worth trying. I have yet to come across a paper that justifies wearing the brace, even at night. Life is short.

[Pooka1]

It's just that, well, our 4th doctor mentioned the genetic testing thing to us and he also explained that he believes the medical community does Not Know if bracing reduces the need for surgery. He didnt say it didnt, he just said they didnt know.

I would run like heck from a surgeon who claimed he KNEW bracing didn't work.

It is very clear that the jury is still out and that it might be shown to work in certain cases.

Both guys we have dealt, one until recently who started using the Charleston seemingly on hope alone, said bracing hasn't been shown to work to date. That is a true statement. Both guys are reasonable and rational on the bracing issue though I have to ask about the Charleston literature from the second.

And I have to wonder why the BRAIST study and every other bracing study isn't stopped yesterday and everyone put in a Charleston if that has been shown to work.

The answer is it looks promising but still no proof is my guess for how our surgeon will respond.

[Dingo]

Bracing

Ballet Mom

his physician’s assistant told me that the doctor was starting to believe that bracing didn’t help, that it was just a genetic determination as to where you would end up.

In a sense that is true. There are probably some kids with severe cases that will not be helped by bracing under any circumstances. But the weight of evidence suggests that braces, although unpleasant will help many kids.

[mamandcrm]

[/QUOTE] Only people who have looked at the entire bracing literature will have an inclination not to brace. I suggest that is virtually NO parent coming into a surgeon consult for the first time. Most lay people, like me, assume the two options are bracing and surgery, never realizing that the third option exists.[/QUOTE]

Actually, I think there is a subset of parents new to scoliosis who will not brace their children because they do not believe it is a tolerable state of existence (not passing judgment on that one way or the other on that, just stating), whether it works or not. It's just something they will not subject their kids to.

[Pooka1]

Sharon said: Only people who have looked at the entire bracing literature will have an inclination not to brace. I suggest that is virtually NO parent coming into a surgeon consult for the first time. Most lay people, like me, assume the two options are bracing and surgery, never realizing that the third option exists.

Actually, I think there is a subset of parents new to scoliosis who will not brace their children because they do not believe it is a tolerable state of existence (not passing judgment on that one way or the other on that, just stating), whether it works or not. It's just something they will not subject their kids to.

I think you have to make a distinction between JIS and AIS.

I agree it is rational to avoid years of bracing in the case of JIS even if you could show it worked every time to avoid surgery.

Of course as it stands now, it seems far more likely they are avoiding bracing because it hasn't been shown to work, not because they think it is intolerable..

[concerned dad]

I remember the utter shock I had when I realized there was even a question about bracing efficacy. I assumed it was a proven treatment.

Dingo, you still have some reading to do.....

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

I used to buy this, I dont anymore (but I may change my mind yet again if some evidence/data can convince me). If the weight of the evidence were that strong, there wouldnt be a Random Trial underway right now. I am sorry to say that there is just as much evidence to say that it doesnt help many kids. (OMG, I am sounding like Sharon )

I've tried to poke holes in the argument, so far without success. The closest I've been able to come is the difference in surgical rates between the SOSORT guys and the SRS guys.

[mamandcrm]

I agree with CD and Sharon that the research support for the efficacy of bracing for the general population of kids with scoliosis is dodgy at best. What nags at me is that my gut instinct is that bracing may works for subsets of subsets of kids (and some subsets of JIS kids may be the population that has possibilities), but to work it down to the distinguishing factors of what may make your kid a candidiate is too precise a calculation to interest researchers (or their endowers). I guess what I am saying is that they are trying to cut too wide a swath through the jungle. But time and money rule...

[Pooka1]

I agree with CD and Sharon that the research support for the efficacy of bracing for the general population of kids with scoliosis is dodgy at best. What nags at me is that my gut instinct is that bracing may works for subsets of subsets of kids (and some subsets of JIS kids may be the population that has possibilities), but to work it down to the distinguishing factors of what may make your kid a candidiate is too precise a calculation to interest researchers (or their endowers). I guess what I am saying is that they are trying to cut too wide a swath through the jungle. But time and money rule...

I agree with this. There are hints that it seems to work for some kids despite lack of controls. Maybe someday they will show that and save many kids from having to wear braces either due to it not working or because their curves would not increase no matter what they did or didn't do.

I suspect the fraction of kids who can be helped with bracing is just so small that it might be trapped in the noise of the studies which, for bracing, is considerable. Some studies are exclusively noise in my little opinion.