TSRH research shows that bracing IS effective!

[Pooka1]

I'm going to repeat my caution again to any parents of braced children reading this thread. Please raise any concerns you might have with your doctor and do not make a treatment decision based on what you might read in this thread. Any decent scoliosis specialist will give you an honest opinion with far more backing knowledge then anyone of us can provide.

Totally agree to which I'll add the research section on this forum is more trouble than it is worth and is potentially very dangerous.

[Pooka1]

Sharon I made you a question here http://www.scoliosis.org/forum/showthread.php?t=10900
I donīt want that focus about bracing research could be lost.

I answered on the other thread but would like to hear your opinion and that of others.

[Pooka1]

The key phrase here is "as far as I can tell." Simply you *can't* tell. This is not your area of expertise, and you're not qualified to interpret the research for other parents. The people who *are* qualified to interpret the research are routinely prescribing braces.

Either the doctors prescribing these braces are idiots incapable of reaching an intelligent decision, in which case maybe we shouldn't be sending our children to them for surgery, or your a,b, and c above is incorrect.

I'm suspecting the latter is true.

Here's the cite...

http://www.scoliosis.org/forum/showp...44&postcount=7

[hdugger]

Here's the cite...

http://www.scoliosis.org/forum/showp...44&postcount=7

Unless that's a cite to my doctor's specific recommendation based on evaluating my son, it's useless.

OTOH, my doctor *did* recommend exercise for my son in general, with no recommendation against any specific type of exercise, so I am continuing to follow the exercise threads with interest.

[Pooka1]

Unless that's a cite to my doctor's specific recommendation based on evaluating my son, it's useless.

Of course it isn't relevant to an adult patient and is useless to you personally. That's not why I posted it.

I posted it to show it is not just my lay opinion and that it was a quote from an expert who is trying to pick up the pieces from the wreckage of one of the few controlled studies out there. As such it might be useful for parents in helping them form questions for their surgeon.

[Ballet Mom]

Here's the cite...

http://www.scoliosis.org/forum/showp...44&postcount=7

Comment on same thread: (At the time I thought it was pretty obvious that it was very advantageous cosmetically to keep the curve as small as possible because with increasing Cobb angle size and increasing rotation, the deformity becomes much greater. But who cares about cosmesis? I do, and I know my daughter does, and I suspect every single person with a deformity agrees with me.

http://www.scoliosis.org/forum/showp...3&postcount=18

I second Dingo's remarks!

CD, I really do believe that it is not that many people who continue to progress in adulthood that are less than fifty degrees at maturity. I have posted a couple of studies in the past that attest to that fact. And it does sound like most of these surgeons continue to state that. Please keep in mind that this forum is a seriously unrepresentative sample of scoliosis patients.

I just wanted to make a comment about the study that keeps getting quoted, i.e:

"As 70% of the observed patients during the original study period did not require any other treatment, 70% of the initially braced patients can therefore be regarded as having been treated unnecessarily."

I really don't think it should be considered that these patients have been treated unncessarily. It is not "unnecessary" just because someone didn't reach the surgical range. I think it is a great benefit that lots of these patients kept their Cobb angles from increasing in size. It probably helps in the longterm also, as the larger curves tend to increase more in adulthood than the smaller ones.

I am noticing people now stating that 70% of people are treated unnecessarily on this forum due to this, and I think that needs to be reevaluated. You know, repeat something enough and it becomes fact.

[Pooka1]

I really don't think it should be considered that these patients have been treated unncessarily. It is not "unnecessary" just because someone didn't reach the surgical range. I think it is a great benefit that lots of these patients kept their Cobb angles from increasing in size. It probably helps in the longterm also, as the larger curves tend to increase more in adulthood than the smaller ones.

How do you know the curves in the braced group stayed smaller than in the observation group at the end of treatment/observation? Did the paper say that? Maybe it did.

[Ballet Mom]

How do you know the curves in the braced group stayed smaller than in the observation group at the end of treatment/observation? Did the paper say that? Maybe it did.

Yes, it did say and was discussed by us. As I recall, it was an average of six degrees. Six degrees has made a huge difference in the look of my daughter's deformity. And if you have to go up to surgical territory to be considered, you will have a significant deformity at that point.

[Pooka1]

Yes, it did say and was discussed by us. As I recall, it was an average of six degrees. Six degrees has made a huge difference in the look of my daughter's deformity. And if you have to go up to surgical territory to be considered, you will have a significant deformity at that point.

Okay. I didn't remember that.

I can't eyeball 6* changes in Cobb but I think if braces can control rotation that will affect cosmesis more than Cobb angle. For my one daughter, whether she didn't have a rotated curve or her brace prevented it from rotating... I can't know which. Her curve was much less noticeable at the same Cobb as her sister's which was extremely rotated early on.

But that's just two data points.

I think it they ever show that braces can permanently unrotate curves or prevent rotation, that might be a rational reason for a teenager to choose a brace even if the brace is not expected to be needed to prevent an increased Cobb angle. The testimonials on this site about adults so unhappy with how their back looks but are sub surgical attest to this as being a real issue in my opinion.

[Ballet Mom]

Okay. I didn't remember that.

I can't eyeball 6* changes in Cobb but I think if braces can control rotation that will affect cosmesis more than Cobb angle. For my one daughter, whether she didn't have a rotated curve or her brace prevented it from rotating... I can't know which. Her curve was much less noticeable at the same Cobb as her sister's which was extremely rotated early on.

But that's just two data points.

I think it they ever show that braces can permanently unrotate curves or prevent rotation, that might be a rational reason for a teenager to choose a brace even if the brace is not expected to be needed to prevent an increased Cobb angle. The testimonials on this site about adults so unhappy with how their back looks but are sub surgical attest to this as being a real issue in my opinion.

The rotation doesn't keep increasing if you stop the size of the curve from increasing. In fact, the rotation typically increases the bigger the curve gets. So I'm sure these sub-surgical adults would be much happier with a six degree increase in their curve, with increased rotation.

In fact, my daughter's rotation has gone from very visible with a hump on her right shoulder and a twist in the middle, to invisible. The last time I was able to get a number from her orthopedist, her rotation had reduced to 8 degrees and 5 degrees. This was in November before she took the Accutane. Her doctor won't talk about it, but the orthotist thinks it's due to her daily ballet classes and the stretching involved with ballet. Perhaps it could also be due to all the antibiotics and their anti-inflammatory properties that she's taken over the past couple of years....who knows? That's what researchers are for.

Surgery doesn't solve everything.

[hdugger]

Of course it isn't relevant to an adult patient and is useless to you personally. That's not why I posted it.

I posted it to show it is not just my lay opinion and that it was a quote from an expert who is trying to pick up the pieces from the wreckage of one of the few controlled studies out there. As such it might be useful for parents in helping them form questions for their surgeon.

It *is* just your lay opinion that leads you to hold this expert's research in higher esteem than the research of other, conflicting, experts. To elevate this opinion above that of any other lay opinion, you'd need to show some evidence that *experts* value this particular piece of research over the conflicting research.

So, for example:

a) After this research was published, standard bracing treatment changed to incorporate this research.

b) You showed this research to the only expert you have access to (your orthopedic surgeon) and he changed the bracing protocol for your daughter(s) based on this information.

From what you and others have said, it appears that a) hasn't happened, so the research has not had enough effect on the experts to change the standard treatment practice.

Did b) happen? So, did you doctor recommend that your daughter(s) *not* be braced based on this research?

[Pooka1]

There is wide and growing agreement the uncontrolled stuff is useless. See Linda's recent comment wherein she is in a position to know the opinions of many surgeons. She is the only one in this sandbox to my knowledge with that amount of access.

That leaves the few controlled studies to be able to say anything at all.

These few studies have known flaws but they are the best we presently have. Everyone is dealing with the same literature.

[flerc]

I'm going to repeat my caution again to any parents of braced children reading this thread. Please raise any concerns you might have with your doctor and do not make a treatment decision based on what you might read in this thread. Any decent scoliosis specialist will give you an honest opinion with far more backing knowledge then anyone of us can provide.

I ever thought it was unnecessary such kind of warnings, because I was mistaken in my assumption that its exists in all sections, all threads, all posts.., like in the Spain Forum, where we could read that: 'You must to know, in general, the messages are opinions mainly of people affected by scoliosis, kyphosis, lordosis ... to share experience, support and information. Before taking any decision, you should always consult a spine specialist'.
It should to be the same here, no?

[hdugger]

That doesn't really address my concern at all.

The "few studies with known flaws" are the best information which *experts* have, along with their own experience and training, in reaching a decision about whether or not a child needs bracing. The more flawed the research, the more they rely on their education and their experience, and, thus, the more we rely on them.

So, the sorry state of the literature in the bracing area makes lay people *more* dependent on their doctors' education and experience, and less able to make sense of the research.

You somehow seem to be arguing the reverse and suggesting that, because the research is so poor, parents ought to just read through it and reach their own conclusions.

[hdugger]

I ever thought it was unnecessary such kind of warnings, because I was mistaken in my assumption that its exists in all sections, all threads, all posts.., like in the Spain Forum, where we could read that: 'You must to know, in general, the messages are opinions mainly of people affected by scoliosis, kyphosis, lordosis ... to share experience, support and information. Before taking any decision, you should always consult a spine specialist'.
It should to be the same here, no?

That's true in general, with the one exception that there is extra caution taken when it appears that participants are possibly endangering children by advocating that they ignore their doctor's advice. The general policy, to the best of my understanding, is that such advocating is not permitted, and threads are locked down when that policy is breached. I believe that's why there's such caution on the Spinecor threads to emphasize that the advice is for adults only.

I am strongly suggesting that the same care be taken in these bracing threads.