Originally posted by LindaRacine
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Sharon, mother of identical twin girls with scoliosis
No island of sanity.
Question: What do you call alternative medicine that works?
Answer: Medicine
"We are all African."
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Originally posted by Pooka1 View PostIn the case of scoliosis bracing, being familiar with the literature is synonymous with realizing how much is unknown still. Claims that more is known than has been shown is to be unfamiliar with the literature.
So, a doctor does a bunch of bracing and has his/her own impressions of the results - seems to work with these kids, not so much with these, and so on and so on. IMO, that working knowledge comprises almost the whole ground of what is known and unknown. The literature contributes very little knowledge, and likely will go on contributing very little knowledge. IMO, what the literature can do is slightly inform the anecdotal knowledge. But it in no way contributes "knowledge."
So, what's "known" lives almost entirely in the anecdotal realm. This discussion keeps coming up with the bracing literature, but it's equally relevant to just about everything concerning scoliosis. What cause PJK, for example, and how can it be avoided? The literature is all over the map - my only hope is that our surgeon can sort it out based on his experience. Should people have physical therapy right after surgery? I think the literature is mute on this topic - have any studies been done? - but doctors seem pretty certain. I'm guessing this comes from some oral history of trial and error which we're not privvy to.
You sometimes discuss the failings in the bracing literature as if it means anything at all about bracing. But, the exact same failings are seen in the research supporting almost every decision related to scoliosis. Either we can rely on the people who actually work with patients every day to sort their way through what they see and draw conclusion about our treatment, or, really, we're just totally sunk. Science - at least the perfect science that you rely on - is almost completely mute and of no help at all.
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Originally posted by hdugger View PostI'm still not clear why that would be useful.
So, a doctor does a bunch of bracing and has his/her own impressions of the results - seems to work with these kids, not so much with these, and so on and so on. IMO, that working knowledge comprises almost the whole ground of what is known and unknown. The literature contributes very little knowledge, and likely will go on contributing very little knowledge. IMO, what the literature can do is slightly inform the anecdotal knowledge. But it in no way contributes "knowledge."
So, what's "known" lives almost entirely in the anecdotal realm. This discussion keeps coming up with the bracing literature, but it's equally relevant to just about everything concerning scoliosis. What cause PJK, for example, and how can it be avoided? The literature is all over the map - my only hope is that our surgeon can sort it out based on his experience. Should people have physical therapy right after surgery? I think the literature is mute on this topic - have any studies been done? - but doctors seem pretty certain. I'm guessing this comes from some oral history of trial and error which we're not privvy to.
You sometimes discuss the failings in the bracing literature as if it means anything at all about bracing. But, the exact same failings are seen in the research supporting almost every decision related to scoliosis. Either we can rely on the people who actually work with patients every day to sort their way through what they see and draw conclusion about our treatment, or, really, we're just totally sunk. Science - at least the perfect science that you rely on - is almost completely mute and of no help at all.Sharon, mother of identical twin girls with scoliosis
No island of sanity.
Question: What do you call alternative medicine that works?
Answer: Medicine
"We are all African."
Comment
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Originally posted by Pooka1 View PostAnecdote gathered wihtout controls is as useless as the literature without controls. Some surgeons may not accept this.
I suspect that surgeons are pretty comfortable with the "informed intuition" that forms the basis of most scoliosis decisions. Or they'd find some more "known" area of science to settle into. And I also suspect that they feel that they "know" these things (levels to fuse, etc) just as well as they "know" whether to brace or not, even though their knowledge is not largely based on rigorous scientific studies.
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Well, with surgery, they get feedback in the form of patient data. For example, if they choose a lowest instrumented level using Method A, they will quickly amass data on if that method produces stability and balance going forward. This doesn't mean that there is only one "best" approach only that there is at least one.
One potential problem here is the pediatric guys who I don't think follow patients out past 18 but rather hand them off. These guys have to keep data themselves on their patients and analyze it. I think they all do this. And they have to confer with colleagues on their data, usually at meetings.
In the case of bracing, they can't know in principle if most of their braced patients weren't unnecessarily braced. As someone said recently, the actual successes are swamped out by the apparent successes of curves that wouldn't have progressed anyway. This appears to be the majority of braced kids.
All they can note is the bracing failures but even in those cases, they really don't have any handle on compliance nor do they necessarily spot all connective tissue patients. So many of those "failures" are only apparent and might just be artifacts of compliance and condition.
So with bracing, they are dealing with a huge false positive rate and also a false negative rate. Bracing is simply NOT like surgery where you can document all results and therefore have a much better sense of what's what, albeit entirely empirically. There is no comparison that I can see in terms of knowing outside controlled studies.Sharon, mother of identical twin girls with scoliosis
No island of sanity.
Question: What do you call alternative medicine that works?
Answer: Medicine
"We are all African."
Comment
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There's a basic problem with the way kids with scoliosis are treated is that the vast majority are treated by pediatricians, who do not see them after around the age of 18.Last edited by LindaRacine; 08-24-2010, 08:20 PM.Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
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Surgery 2/10/93 A/P fusion T4-L3
Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
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Originally posted by LindaRacine View PostThere's a basic problem with the way kids with scoliosis are treated is that the vast majority are treated by pediatricians, who do not see them after around the age of 18.Sharon, mother of identical twin girls with scoliosis
No island of sanity.
Question: What do you call alternative medicine that works?
Answer: Medicine
"We are all African."
Comment
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Originally posted by Pooka1 View PostSo with bracing, they are dealing with a huge false positive rate and also a false negative rate. Bracing is simply NOT like surgery where you can document all results and therefore have a much better sense of what's what, albeit entirely empirically. There is no comparison that I can see in terms of knowing outside controlled studies.
As to seeing the results, it's somewhat similar to bracing in that they see the immediate results of the surgery but don't have a clear sense of how their surgical choices map to long-term life quality. How did their particular choice of fusion level/method turn out 5 (or even 2) years down the road? I suspect they don't know enough about that, even anecdotally, and I'm certain they don't know it through well-controlled scientific studies.
So, to draw the parallel
- surgeons don't know whether bracing maps to patients final curve when the brace is removed (the important outcome for bracing)
- surgeons don't know how their choice of levels fused (or any other surgical decision) maps to quality of life (the important outcome for surgery)
In both cases, they have no solid research to guide their most critical decisions.
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Originally posted by hdugger View PostI'm just saying that their method of "knowing" is the same in both cases - they do something on an individual and they look at the results. That's in contrast to the idea that "knowing" is only available through controlled research studies. Were that the case, surgeons couldn't "know" anything.
As to seeing the results, it's somewhat similar to bracing in that they see the immediate results of the surgery but don't have a clear sense of how their surgical choices map to long-term life quality. How did their particular choice of fusion level/method turn out 5 (or even 2) years down the road? I suspect they don't know enough about that, even anecdotally, and I'm certain they don't know it through well-controlled scientific studies.
So, to draw the parallel
- surgeons don't know whether bracing maps to patients final curve when the brace is removed (the important outcome for bracing)
- surgeons don't know how their choice of levels fused (or any other surgical decision) maps to quality of life (the important outcome for surgery)
In both cases, they have no solid research to guide their most critical decisions.
--LindaNever argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
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Surgery 2/10/93 A/P fusion T4-L3
Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
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My sense is that the major weakness in scoliosis surgery research isn't the lack of long-term follow-up (although that's pretty bad!), but the lack of a meaningful outcome measure.
<rant on>
Surgeons tend to fall back on the Cobb angle, I assume because it's so gosh-darned easy to measure. But just reading this forum, I've seen very little correlation between Cobb angle and quality of life in adult patients. Although the Cobb angle seems to be pretty good for measuring outcome in kids, it just seems to fall apart completely for adults. There has to be some better way of getting a complete picture of an adult - how are they balanced, overall? did their initial complaints resolve? did they end up with new pains? are they able to get back to what they used to do? The survey measures just don't seem accurate or complete enough. There needs to be some combination of actually *looking* at them and judging their overall balance, and then some set of physical tests they try to complete. Without that, you're stuck judging outcome from a single number which really says nothing at all about the things you're interested in.
<rant over>
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Originally posted by hdugger View PostI'm just saying that their method of "knowing" is the same in both cases - they do something on an individual and they look at the results. That's in contrast to the idea that "knowing" is only available through controlled research studies. Were that the case, surgeons couldn't "know" anything.
As to seeing the results, it's somewhat similar to bracing in that they see the immediate results of the surgery but don't have a clear sense of how their surgical choices map to long-term life quality. How did their particular choice of fusion level/method turn out 5 (or even 2) years down the road? I suspect they don't know enough about that, even anecdotally, and I'm certain they don't know it through well-controlled scientific studies.
With bracing, there are too many variables not under the surgeon's control and known huge false positive rates that are in principle not identifiable empirically. And then there is the unknowable false negative rate which I suspect exists but may not. It seems very few things can be held constant while varying others in bracing studies.
So, to draw the parallel
- surgeons don't know whether bracing maps to patients final curve when the brace is removed (the important outcome for bracing)
- surgeons don't know how their choice of levels fused (or any other surgical decision) maps to quality of life (the important outcome for surgery)
In both cases, they have no solid research to guide their most critical decisions.
In contrast, we see bracing going off in new directions (e.g., Spinecor) because there is no there there to build on because of the huge false positive and potential false negative rates. It is intrinsically harder to study than surgery because you don't really have a clear shot at holding at least some variables constant while varying one. The combination of patient plus brace seems far wider than the combination of patient plus fusion with kids. The results of bracing are all over the map and known to be incorrect at times whereas the fusions in kids tend to group pretty well and positively, at least in the short to mid term. Adult fusion is more all over the map but still probably groups more positively than bracing when correcting for false positives in the bracing.Last edited by Pooka1; 08-26-2010, 11:30 AM.Sharon, mother of identical twin girls with scoliosis
No island of sanity.
Question: What do you call alternative medicine that works?
Answer: Medicine
"We are all African."
Comment
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We're really just trying to pin down the definition of "known." So, when you say:
"Again, I think more is known about surgical outcomes than you think. For example I think they know good balance in all planes usually maps to a good result radiographically and quality of life-wise and in the long term, at least for T fusions. Equally, they know fusing into the lumbar with H rods can be problematic. Pedicle screws aim in part to solve those problems. It is a constant honing and perfecting using the previous generation instrumentation."
you're talking about knowing as a kind of trial-and-error anecdotal process, guided mostly by surgeon's shared experience and informed intuition.
That's really all I'm getting at. It's *all* that kind of knowledge - none of it is what anyone would call clearly researched and replicated.
I understand your "black box" argument about bracing, but I'd suggest that surgeons are tracking their bracing results intuitively in a way that isn't represented in the literature, in much the same way that they track their surgical results. I suspect it's that shared intuition that serves as the basis of knowledge about the kinds of patients who benefit from bracing. So, although they don't understand the inner workings of the box, they do see into it well enough to recognize the kinds of patients who aren't benefiting from bracing. If it were entirely a black box, they'd be bracing every patient who comes in.
I'm not necessarily pro-bracing (nor necessarily pro-surgery ), but I don't think the arguments against it involves the lack of clear scientific proof. There isn't clear scientific proof for any of this stuff.
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Originally posted by hdugger View PostI understand your "black box" argument about bracing, but I'd suggest that surgeons are tracking their bracing results intuitively in a way that isn't represented in the literature, in much the same way that they track their surgical results. I suspect it's that shared intuition that serves as the basis of knowledge about the kinds of patients who benefit from bracing. So, although they don't understand the inner workings of the box, they do see into it well enough to recognize the kinds of patients who aren't benefiting from bracing. If it were entirely a black box, they'd be bracing every patient who comes in.
Intuition is much less important in surgery now that there is a huge mass of empirical data on the relatively few methods and combinations of methods to skin the cat. And because it builds on itself.
I guess that is the point... bracing relies on intuition which must fail in that particular case and surgery relies on tons of empirical data where you can hold some things constant while varying others. Because of this, surgery is simply more tractable and therefore more can be known outside controlled studies.Sharon, mother of identical twin girls with scoliosis
No island of sanity.
Question: What do you call alternative medicine that works?
Answer: Medicine
"We are all African."
Comment
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Originally posted by hdugger View PostI understand your "black box" argument about bracing, but I'd suggest that surgeons are tracking their bracing results intuitively in a way that isn't represented in the literature, in much the same way that they track their surgical results. I suspect it's that shared intuition that serves as the basis of knowledge about the kinds of patients who benefit from bracing. So, although they don't understand the inner workings of the box, they do see into it well enough to recognize the kinds of patients who aren't benefiting from bracing. If it were entirely a black box, they'd be bracing every patient who comes in.
But in retrospect, I think the surgeon was simply highly skilled and attuned to my daughter's physical traits. He knew she was very thin, and was a ballerina and therefore likely very flexible, which he probably could figure out in the exam anyway, and he encouraged her to continue with the ballet. He also told me it was the brace he would use on his daughter if she had scoliosis, so he had obviously had good experience with it, at least for kids with the same physical attributes, and felt it had a good risk/reward trade-off.
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Originally posted by LindaRacine View PostFor the most part, I agree with this. But, non-pediatric surgeons have been doing some (though not enough) long-term followup on surgical patients. As far as I know, no one other than the Swedish group has done any long-term peds followup (surgical or non-surgical).
--Linda
Thank goodness for the Swedes!Last edited by Ballet Mom; 08-26-2010, 12:05 AM.
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