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Sherie
07-14-2010, 07:20 PM
I just received the most recent TSRH publication in the mail today.

I've scanned the newsletter so that you can read this for yourself. The study was published in the June 2010 issue of The Journal of Bone and Joint Surgery.

I'm not here to debate this but I hope this offers some hope to parents whose kids are still eligible to be braced. If I'd had this information in my hands while Sheena was still pre-surgery, I would have pursued bracing more aggressively.

Texas Scottish Rite in Dallas treats thousands of cases of scoliosis a year at no charge and they are heavily involved in research (they discovered the first gene associated with idiopathic scoliosis); in other words, they are a highly trustworthy source for this information.

Edit: Texas Scottish Rite was just named #2 best Children's orthopedic hospital in the nation.

http://health.usnews.com/best-hospitals/pediatric-rankings/orthopedics

Pooka1
07-14-2010, 08:39 PM
That sounds hopeful.

Let's hope this isn't another in-brace study. Another study looking at compliance found much less progression in more compliant kids but it was an in-brace study. They need to follow those kids out past the day after they take the brace off.

jrnyc
07-14-2010, 10:16 PM
i have the same question that Sharon asked...i'd be curious as to how these kids are doing some years down the road...it would be really good if the same research folks could follow up on this! results showing curve reduction that doesn't disappear with passing years would make this a lot more...impressive!

jess

LindaRacine
07-14-2010, 11:11 PM
This is not new knowledge. Here's just one example:

Full Text (http://www.google.com/url?sa=t&source=web&cd=4&ved=0CCUQFjAD&url=http%3A%2F%2Fwww.ncbi.nlm.nih.gov%2Fpubmed%2F1 5371711&ei=T4k-TNGpJNWLnQfAn4jqBA&usg=AFQjCNGPQkic5vrvgQVQu_dy7sbJzfO4ug&sig2=YpU6rY6dHAvqlg76tD6wBQ)

Sorry, I posted the wrong URL. This is the one that I thought I was posting:

http://early-onset-scoliosis.com/Documents/BraceCompliance.pdf

Pooka1
07-15-2010, 05:42 AM
This is not new knowledge. Here's just one example:

Full Text (http://www.google.com/url?sa=t&source=web&cd=4&ved=0CCUQFjAD&url=http%3A%2F%2Fwww.ncbi.nlm.nih.gov%2Fpubmed%2F1 5371711&ei=T4k-TNGpJNWLnQfAn4jqBA&usg=AFQjCNGPQkic5vrvgQVQu_dy7sbJzfO4ug&sig2=YpU6rY6dHAvqlg76tD6wBQ)

I think that's the article someone posted a while back which turned out to be the last in-brace measurement or something if you can believe it. While that might seem like a very important thing to measure, it is not known how that relates to curve stabilization even a few months out not to mention a few or many years out.

And I note the ethicists okayed BRAIST after that study. I wonder if this new study will change anything.

Sherie
07-15-2010, 08:08 AM
This is not new knowledge. Here's just one example:

Full Text (http://www.google.com/url?sa=t&source=web&cd=4&ved=0CCUQFjAD&url=http%3A%2F%2Fwww.ncbi.nlm.nih.gov%2Fpubmed%2F1 5371711&ei=T4k-TNGpJNWLnQfAn4jqBA&usg=AFQjCNGPQkic5vrvgQVQu_dy7sbJzfO4ug&sig2=YpU6rY6dHAvqlg76tD6wBQ)

This study is not the same. They're only looking at compliance. In the TSRH study, they've actually concluded that compliant bracing has resulted in stopping curve progression.

jrnyc
07-15-2010, 08:28 AM
FOR HOW LONG....??? is there a follow up of more than immediate results? that is the question...

jess

Sherie
07-15-2010, 08:42 AM
Here's the abstract:

http://www.ncbi.nlm.nih.gov/pubmed/20516309

You can purchase the full study if you really need the details.

I see some hope here and I would give it a try vs. not doing anything and just allowing nature to take it's course.

jrnyc
07-15-2010, 08:45 AM
blood pressure? is that the abstract you meant?

jess

Sherie
07-15-2010, 08:47 AM
FOR HOW LONG....??? is there a follow up of more than immediate results? that is the question...

jess

I don't have that answer and I'm not going to purchase the complete study to find out but you're more than welcome to.

If my kid was eligible to be braced, I would try this rather than waiting for a follow up study of several years. Scoliosis doesn't wait.

Sherie
07-15-2010, 08:48 AM
blood pressure? is that the abstract you meant?

jess

whoops, i reposted the link.

jrnyc
07-15-2010, 08:52 AM
thanks for reposting it...

i would conclude nothing from those conclusions :rolleyes: without mention of follow up...no one should have to "purchase" a study to find that out! i suspect if not mentioned, it was because there was no follow up!
otherwise, they might be shouting results from the rooftops!

jess

Sherie
07-15-2010, 09:01 AM
thanks for reposting it...

i would conclude nothing from those conclusions :rolleyes: without mention of follow up...no one should have to "purchase" a study to find that out! i suspect if not mentioned, it was because there was no follow up!
otherwise, they might be shouting results from the rooftops!

jess

I think they are basically shouting from the rooftops when they post this in the The Journal of Bone and Joint Surgery. I believe these are the types of publications our surgeons read when they've looking for new and relevant information. They're not on the internet searching forums and abstracts.

I purchased full articles when I was researching for my dd's surgery. If it's that important to you, then it's what you do but since we're way beyond that, I'm not going to bother. All I can say is surgery is not a piece of cake and will have lasting effects for my dd. If there's any hope other than waiting and watching, I would try it.

Pooka1
07-15-2010, 09:09 AM
This study is not the same. They're only looking at compliance. In the TSRH study, they've actually concluded that compliant bracing has resulted in stopping curve progression.

That group of names looks familiar.

I think this is an in-brace study. I hope I'm wrong. I hope someone gets the article. The previous article with similar conclusions by I think this group was in-brace. But it is now a few years on and maybe this is a follow up with those patients a few years out of brace. That would be a very exciting thing and a very important paper!

But if it is a new group of patients then the obvious quesiton is why aren't they reporting on the first group? This is the same criticism that can be leveled at Verd Mooney's two torso rotation studies. There was three years between the two studies and rather than present more data on the original set of patients he simply REPUBLISHED the data for that group and added a few new patients. Double publishing data without saying it explicitly and having a damn good reason is not only the fault of the author but of the peer reviewers in my opinion.

If this compliance paper is by the same authors who published the earlier article and they simply started a new study with new patients rather than follow on with the first rgoup then that should trigger some questions. Not 100% sure it its the same group but I think it might be.

Sherie
07-15-2010, 09:21 AM
That group of names looks familiar.

I think this is an in-brace study. I hope I'm wrong. I hope someone gets the article. The previous article with similar conclusions by I think this group was in-brace. But it is now a few years on and maybe this is a follow up with those patients a few years out of brace. That would be a very exciting thing and a very important paper!

But if it is a new group of patients then the obvious quesiton is why aren't they reporting on the first group? This is the same criticism that can be leveled at Verd Mooney's two torso rotation studies. There was three years between the two studies and rather than present more data on the original set of patients he simply REPUBLISHED the data for that group and added a few new patients. Double publishing data without saying it explicitly and having a damn good reason is not only the fault of the author but of the peer reviewers in my opinion.

If this compliance paper is by the same authors who published the earlier article and they simply started a new study with new patients rather than follow on with the first rgoup then that should trigger some questions. Not 100% sure it its the same group but I think it might be.

Sharon

I understand your concerns but when you say "I think" then you are making assumptions, this forum has no place for assumptions, right? Then to go on and post results from a previous study that may not have any relevance to this one is somewhat irresponsible. If you know for sure what you're saying is a fact, then please find the study you're referring to and post.

jrnyc
07-15-2010, 09:27 AM
Thanks for pointing that out, Sharon...it is important to be aware of that kind of stuff...i didnt realize that group may have done a previous study of same nature...in brace...
i am sure someone on forum will get a hold of the study and look at these questions...

wonder if Linda has seen this particular study...

jess

PNUTTRO
07-15-2010, 09:37 AM
Sharon. I think you're right. It looks like the same batch.

The only thing that is a little hinky is Figure 3 from the paper. They present percentages of patients that progress or don't progress based on the number of hours in the brace. They don't give the number of patients in each stratified group, which may indicate that the group of greater than 12 hr compliance is very small.

The number of kids that progressed=50 didn't progress=50 (not stratified for brace wear).

The range of hours of brace wear for kids who didn't progress was zero to twenty-one. That's a pretty broad range. The range for progression was 0.01-16. If those ranges were significant, they would have published the numbers.

I still think that bracing can help, but I have doubts about the significance here. Then again, I always am skeptical.

Dingo
07-15-2010, 09:42 AM
Good find Sherie

Without spending dozens of paragraphs to make my point...

I believe the overall weight of evidence supports the notion that bracing works. I'm not saying it's pleasant or there aren't better treatment options (http://www.scoliosis.org/forum/showthread.php?t=8976). But overall it's probably helpful.

When Dr. Moreau's blood test (http://www.scoliosis.org/forum/showthread.php?t=10705) is released we'll know for sure because it can be used to test the effectiveness of bracing or other treatments.

jrnyc
07-15-2010, 09:53 AM
hey Pnuttro
1-21 hours...that is a HUGE span! ridiculous..how is that part of a "scientific" study?!

jess

Sherie
07-15-2010, 10:08 AM
Good find Sherie

Without spending dozens of paragraphs to make my point...

I believe the overall weight of evidence supports the notion that bracing works. I'm not saying it's pleasant or there aren't better treatment options (http://www.scoliosis.org/forum/showthread.php?t=8976). But overall it's probably helpful.

When Dr. Moreau's blood test (http://www.scoliosis.org/forum/showthread.php?t=10705) is released we'll know for sure because it can be used to test the effectiveness of bracing or other treatments.


Thanks. Bracing is not pleasant, we tried it too but without evidence that it would halt progression, it was hard to stick too.

Sherie
07-15-2010, 10:09 AM
Sharon. I think you're right. It looks like the same batch.

The only thing that is a little hinky is Figure 3 from the paper. They present percentages of patients that progress or don't progress based on the number of hours in the brace. They don't give the number of patients in each stratified group, which may indicate that the group of greater than 12 hr compliance is very small.

The number of kids that progressed=50 didn't progress=50 (not stratified for brace wear).

The range of hours of brace wear for kids who didn't progress was zero to twenty-one. That's a pretty broad range. The range for progression was 0.01-16. If those ranges were significant, they would have published the numbers.

I still think that bracing can help, but I have doubts about the significance here. Then again, I always am skeptical.

I don't see what you're talking about, is there more here than I'm seeing? Do you have the full publication?

Pooka1
07-15-2010, 10:24 AM
I don't see what you're talking about, is there more here than I'm seeing? Do you have the full publication?

None of these details are likely to matter if this is yet another in-brace study and not a few years out of the previous study cohort.

If this is another Mooney/Torso rotation situation then that is somewhat worse than no publication. That is, they may have looked at the long term data and not liked what they saw so they designed a new and hopefully better study. Let's really really really hope that isn't the case. And if that is the case I certainly hope they mention that they did not follow up with the previous group and the reason why not. Mooney died before someone addressed that question to him on his two torso rotation studies.

flerc
07-15-2010, 10:27 AM
I know that in some cases (not all) the degrees reduced with the brace increase again, some time after removing the brace, and even when skeletal maturity is reached.
Someone knows how it is possible? It’s a matter of muscles, ligaments, bones, disks, tendons, fascias, organs…something else ?

Pooka1
07-15-2010, 10:30 AM
I know that in some cases (not all) the degrees reduced with the brace increase again, some time after removing the brace, and even when skeletal maturity is reached.
Someone knows how it is possible? It’s a matter of muscles, ligaments, bones, disks, tendons, fascias, organs…something else ?

The brace is holding the curve. Remove the brace and there is nothing to hold the curve.

Sherie
07-15-2010, 10:31 AM
I think it's almost funny how some of you are immediately discrediting a study from a scoliosis research institution. Why? Do you think these are ignorant, uninformed "lay people" conducting these studies? The fact that they treat more than 6,000 children every year for scoliosis obviously has no merit here.

I went to TSRH, it's a huge hospital and their focus is on orthopedics and scoliosis. Very caring physicians too. Dr. Lenke told me he goes there to teach some of his techniques, I guess he doesn't think they're a joke.

Why don't you guys write to the researchers with your concerns let us know what they say.

Sherie
07-15-2010, 10:32 AM
The brace is holding the curve. Remove the brace and there is nothing to hold the curve.

Is this a fact, do you have hard evidence to back this claim? I'm not saying you're wrong, but we need facts, not assumptions.

Sherie
07-15-2010, 10:36 AM
None of these details are likely to matter if this is yet another in-brace study and not a few years out of the previous study cohort.

If this is another Mooney/Torso rotation situation then that is somewhat worse than no publication. That is, they may have looked at the long term data and not liked what they saw so they designed a new and hopefully better study. Let's really really really hope that isn't the case. And if that is the case I certainly hope they mention that they did not follow up with the previous group and the reason why not. Mooney died before someone addressed that question to him on his two torso rotation studies.

Why don't these details matter? That's the whole point of research, it's in the details. I didn't see what she was referring to and simply wanted to know what she was looking at.

Why do you keep quoting the Mooney study? That has no relevance here and is way off topic. If you want to bash that study, then start a new thread.

Pooka1
07-15-2010, 10:37 AM
Is this a fact, do you have hard evidence to back this claim? I'm not saying you're wrong, but we need facts, not assumptions.

It's obvious.

If you don't think it is obvious then why do you think curves go back to pre-brace levels? And why are braces only claimed to hold curves (at best) and not reduce them permanently?

Pooka1
07-15-2010, 10:40 AM
Why don't these details matter? That's the whole point of research, it's in the details. I didn't see what she was referring to and simply wanted to know what she was looking at.

Why do you keep quoting the Mooney study? That has no relevance here and is way off topic. If you want to bash that study, then start a new thread.

I keep referencing that study because I tnk there is a high chance of a parallel here in terms of researchers starting a new study rather than doing a follow up with a revious similar study. Hopefully someone will get the paper.

I assume you might agree that if this is an in-brace study, it is premature, yes? I mean the other in-brace study with similar results happened before the ethicists okayed BRAIST.

Sherie
07-15-2010, 10:52 AM
I keep referencing that study because I tnk there is a high chance of a parallel here in terms of researchers starting a new study rather than doing a follow up with a revious similar study. Hopefully someone will get the paper.

I assume you might agree that if this is an in-brace study, it is premature, yes? I mean the other in-brace study with similar results happened before the ethicists okayed BRAIST.

No, I don't think it's premature if they are only publishing the facts as they have developed. If they've been bracing for 18 months or whatever time, and they didn't see any progression during that time in the compliant bracers, then they're drawing a factual, observable conclusion from their data. Now if they go on to say somewhere that this will hold forever, then that's a false statement.

flerc
07-15-2010, 10:57 AM
The brace is holding the curve. Remove the brace and there is nothing to hold the curve.

Of course I was not talking about something so obvious. I referred to cases when degrees increased in some months or years after the remotion.

Pooka1
07-15-2010, 11:35 AM
Of course I was not talking about something so obvious. I referred to cases when degrees increased in some months or years after the remotion.

It is reasonable to conclude from the data in hand that braces may only delay surgery as opposed to avoid it. It is impossible to say. That is not proven but it certainly hasn't been disproven at this point because of the huge backdrop of unnecessarily treated kids that we know are out there based on the few controlled studies. It is also impossible to say if any particular case of brace usage stopped a curve given that most curves do not progress and that there are at least 3 people on this little group who got into the 50s and their curve stopped (without brace in at least one case). Once you know those things, it's very hard to make definitive statements about bracing efficacy.

If brace wear was easy we would never be discussing this. I hope it is shown to be effective some day just so kids who wore them can know there was a chance.

Sherie
07-15-2010, 11:58 AM
It is reasonable to conclude from the data in hand that braces may only delay surgery as opposed to avoid it.

So, you are able to draw this conclusion based on the study I posted? Please explain based on the facts given.



That is proven but it certainly hasn't been disproven at this point because of the huge backdrop of unnecessarily treated kids that we know are out there based on the few controlled studies. It is also impossible to say if any particular case of brace usage stopped a curve given that most curves do not progress and that there are at least 3 people on this little group who got into the 50s and their curve stopped (without brace in at least one case).

the publication specifically states the 70% who wore their brace <7 hrs/day demonstrated curve progression and 82% who wore it >12 hrs/day did not have curve progression. Can we then conclude that 30% would not have curve progression anyways regardless of bracing and 18% would have progressed regardless of bracing? Seems obvious to draw those conclusions but I'm sure it's more complicated than that.



If brace wear was easy we would never be discussing this. I hope it is shown to be effective some day just so kids who wore them can know there was a chance.

Agreed, but there are not many treatments for ANY medical condition that doesn't have some sort of side effects, including scoliosis surgery.

Hopefully, the new tests that are out will be able to pinpoint those kids who will progress but that's a very new technology and will probably be some time before it's used mainstream as a screening tool. I think most surgeons would err on the side of caution and brace at this time.

flerc
07-15-2010, 12:02 PM
It is reasonable to conclude from the data in hand that braces may only delay surgery as opposed to avoid it. It is impossible to say. That is not proven but it certainly hasn't been disproven at this point because of the huge backdrop of unnecessarily treated kids that we know are out there based on the few controlled studies. It is also impossible to say if any particular case of brace usage stopped a curve given that most curves do not progress and that there are at least 3 people on this little group who got into the 50s and their curve stopped (without brace in at least one case). Once you know those things, it's very hard to make definitive statements about bracing efficacy.

If brace wear was easy we would never be discussing this. I hope it is shown to be effective some day just so kids who wore them can know there was a chance.

I know in some cases the delay remains over 10 years. This people could die tommorrow in an accident or never increase degrees any more, who knows..
Any way, in other cases when, after skeletal maturity, the curve increase again over time, how could it be explained in a scientifical way?

Sherie
07-15-2010, 12:11 PM
As an afterthought, I remembered that I emailed Dr. Mooney about his study to see if there were any locations in Houston participating. He did reply back (they were not). My point is these people are not out of our reach, you just have to make an effort to reach them. If there is a question about the legitimacy of this study, you should make an effort to contact these researchers and get the true facts and post them here.

In reference to Dr. Mooney, he was a retired scoliosis surgeon trying to find a better way to treat this condition before it progressed to surgery. He sounded very compassionate in his response to me. Don't assume all these physicians and researchers are conducting these studies for personal gain, I believe many if not most of them are a truly dedicated group looking for answers just like us.
Perhaps the research was flawed, but the intentions are not.

LindaRacine
07-15-2010, 02:24 PM
This study is not the same. They're only looking at compliance. In the TSRH study, they've actually concluded that compliant bracing has resulted in stopping curve progression.

Sorry, my copy/paste apparently didn't work correctly. I've posted the correct URL above.

And, so you don't have to look back:

http://early-onset-scoliosis.com/Documents/BraceCompliance.pdf

And, here's another one:

http://www.srs.org/professionals/bracing_manuals/section3.pdf

Sherie
07-15-2010, 02:41 PM
Sorry, my copy/paste apparently didn't work correctly. I've posted the correct URL above.

And, so you don't have to look back:

http://early-onset-scoliosis.com/Documents/BraceCompliance.pdf

And, here's another one:

http://www.srs.org/professionals/bracing_manuals/section3.pdf

Thanks Linda. So basically, these previous studies concur that bracing IS effective.

Pooka1
07-15-2010, 03:02 PM
Thanks Linda. So basically, these previous studies concur that bracing IS effective.

If all these studies allow the conclusion that bracing works as you seem to think, and if all of these studies PREDATE BRAIST and the ethics panel that okayed that study then how do you square that?

ETA: The article you posted is June 2010. Why hasn't the BRAIST study been halted immediately on ethical grounds?

Pooka1
07-15-2010, 03:07 PM
Why don't you guys write to the researchers with your concerns let us know what they say.

There is no need. They understand the limitations of their studies.

It's like if I do a time course study with 10 time points and publish at the point where I have only collected data on the first two time points. That's assuming this is another in-brace study.

Pooka1
07-15-2010, 03:12 PM
Why don't these details matter? That's the whole point of research, it's in the details. I didn't see what she was referring to and simply wanted to know what she was looking at.

There are limitations of what you can do with any data set. And there are Achilles heels. I've mentioned this before but once my adviser's adviser found out he didn't adequately control one of his studies after reading the methods section, the paper was literally tossed in the garbage can in front of my adviser. That was correct. My adviser took that to heart and started designing well controlled studies that took him to the top of his field. Maybe he only got there because of the experience of having his paper tossed in the garbage, who knows. Just hearing that story made a huge impression on me. Science is hard.


Why do you keep quoting the Mooney study? That has no relevance here and is way off topic.

It is directly relevant if chose to start with a new group instead of following up with the first group. Then we have to ask why. There are legitimate answers to that.

Pooka1
07-15-2010, 03:14 PM
No, I don't think it's premature if they are only publishing the facts as they have developed. If they've been bracing for 18 months or whatever time, and they didn't see any progression during that time in the compliant bracers, then they're drawing a factual, observable conclusion from their data. Now if they go on to say somewhere that this will hold forever, then that's a false statement.

What is the evidence that the last in-brace reading (if that is what this is) has any bearing whatsoever to a reading a week out or a month out or a year out or ... etc.?

If anyone has seen a paper no this I would like to be edified.

skevimc
07-15-2010, 05:04 PM
As I read the article, it seems to be a new study i.e. patient population. However, the patients were recruited between 1998 and 2000. If this group published on the same data I can't find it and they don't refer to that in the introduction. The whole group published a paper in 1997 comparing Boston to Charleston and the lead author (Katz) published something in 2001 but that was a retrospective study.

All patients were risser 2 or less and between 25° and 45°. X-rays taken every 4 months out of brace. All patients were followed until skeletal maturity. Failure was >6° progression or progression to surgery.

They do a fairly complex analysis linking brace wear to progression and stratifying by tri-radiate cartilage, risser, time of day the brace is worn, compliance and total number of hours of brace wear.

Of the 100 patients, 50 progressed and 50 did not. Of the 50 that did progress, 28 had surgery. The non-sugical group had a significantly higher number of daily brace wear (10.6 v 7.2), total number of braced hours (5002 v 2552), and percent compliance (42.4 v 24.4). These numbers include the non-progression group as well, i.e. 28 had surgery and 72 did not and 22 of the 72 with no surgery had progression. It would be interesting to see the analysis of the surgical v non-surgical in the progressing group.

The group that had the highest number of progressions was the risser 0 group. The risser 0 non-progressive group had a significantly higher number of daily brace wear than the progressive group (9.9 v 5.2).

The article goes on and on. Lots of statistics but the data seems to be fairly clearly presented, that is, they don't seem to be massaging the data too much. There are a lot of more detailed results in the text, but requires careful reading. Of interest.


Brace treatment is traditionally compared with the natural history study by Lonstein and Carlson, in which 68% of curves between 20° and 29° in patients at Risser 0 or 1 progressed. Only one of our thirteen patients at Risser 0 who wore the brace for more than twelve hours per day experienced curve progression. This benefit continued between the completion of brace wear and the latest follow-up. Those wearing the brace for seven to twelve hours per day had progression 39% of the time, whereas those who wore the brace fewer than seven hours per day had progression 68% of the time, which is the same as the natural history

The latest follow-up date isn't mentioned, but the patients were recruited at least 10 years ago. So it's not a huge jump to say these have remained stable after brace treatment. However, I do wish they would present that data. But it's possible they didn't have IRB approval for that.

Pooka1
07-15-2010, 05:21 PM
All of that was quite interesting. Thanks for crunching it. I would like to read the paper.



The latest follow-up date isn't mentioned, but the patients were recruited at least 10 years ago. So it's not a huge jump to say these have remained stable after brace treatment. However, I do wish they would present that data. But it's possible they didn't have IRB approval for that.

That's the make or break aspect of it, though.

And if these patients go back 10 years, how did they choose a mere 100 out of all of them? They have to worry about data selection which I'm guessing can be inadvertent also. That is, they inadvertently used a criterion that was correlated with a certain outcome... something like the inadvertent stacking of T curves in the non-braced group versus L curves in the braced group of that other study which I'm blanking on the name of.

And speaking of T versus L curves, I hope they indicated which compliance group had which curve types. It would invalidate the results to some extent if the L group was over-represented in the compliant group and(or) the T group was over-represented in the less compliant group.

I also question the 68% figure for chance of progression between 20* and 29* at low Risser. I think that comes from a table where there are no errors bars if I'm remembering correctly. If they showed the error bars, that number might appear less hard let's say than it appears.

Anywho, thanks again for the synopsis.

LindaRacine
07-15-2010, 09:14 PM
Thanks Linda. So basically, these previous studies concur that bracing IS effective.

Hi Sherie...

The studies found that bracing works. However, since that time many specialists have agreed with Sharon, that since there is no control, they cannot tell for certain whether the braced kids might not have progressed without any treatment.

With that said, if I had a skeletally immature child with a curve between 25-40 degrees, I'd push them to wear a brace as much as possible.

Regards,
Linda

LindaRacine
07-15-2010, 09:40 PM
Hi Kevin...

The real natural history of the cohort won't be known until they reach at least the age of 35, when a lot of curves seem to start causing trouble. If bracing doesn't keep most of the patients out of the O.R., then it's going to be judged pretty worthless, because there's a big cost, both monetarily and in terms of the additional pain and disability of adult scoliosis surgery vs. adolescent scoliosis surgery.

At this point, it would be reasonable to say that bracing might work, but no one yet knows for certain.

Regards,
Linda

skevimc
07-16-2010, 12:33 AM
And if these patients go back 10 years, how did they choose a mere 100 out of all of them? They have to worry about data selection which I'm guessing can be inadvertent also. That is, they inadvertently used a criterion that was correlated with a certain outcome... something like the inadvertent stacking of T curves in the non-braced group versus L curves in the braced group of that other study which I'm blanking on the name of.


It's a prospective study so the time for recruitment was 1998-2000, i.e. they didn't have 10 years of patients from which to chose. In that recruitment window there were 260 patients prescribed a Boston brace. 134 didn't meet the inclusion criteria, non-AIS, previous orthotic treatment, risser 3 or more, curve too big and 1 declined.



And speaking of T versus L curves, I hope they indicated which compliance group had which curve types. It would invalidate the results to some extent if the L group was over-represented in the compliant group and(or) the T group was over-represented in the less compliant group.


They didn't report in this way and I wish they had. There might be some nuggets buried in the text though. It would be easy to email them and ask.

At any rate, there were 62 double major, 26 single T, 8 T/L or L, 3 double T, 1 triple. So the majority were a higher risk.



I also question the 68% figure for chance of progression between 20* and 29* at low Risser. I think that comes from a table where there are no errors bars if I'm remembering correctly. If they showed the error bars, that number might appear less hard let's say than it appears.


That number is correct. It does come from a table and is mentioned in the text. It's just 68% of the curves with risser 0 or 1 and 20-29 (deg) progressed.


Hi Kevin...

The real natural history of the cohort won't be known until they reach at least the age of 35, when a lot of curves seem to start causing trouble. If bracing doesn't keep most of the patients out of the O.R., then it's going to be judged pretty worthless, because there's a big cost, both monetarily and in terms of the additional pain and disability of adult scoliosis surgery vs. adolescent scoliosis surgery.

At this point, it would be reasonable to say that bracing might work, but no one yet knows for certain.



I agree that the long-term results are still in question. But the results through skeletal maturation seem to be fairly solid. But I see your point and can see how problematic it is for any form of treatment/management that does not follow the patient until 35 and beyond.

Pooka1
07-16-2010, 06:08 AM
It's a prospective study so the time for recruitment was 1998-2000, i.e. they didn't have 10 years of patients from which to chose. In that recruitment window there were 260 patients prescribed a Boston brace. 134 didn't meet the inclusion criteria, non-AIS, previous orthotic treatment, risser 3 or more, curve too big and 1 declined.

Oh wow. Does that means they have data as long as about 8-10 years out. That would be very important. Or does it mean they just collected the last in-brace radiograph from patients who were recruited as far back as 1998 with nothing since for any of them?


They didn't report in this way and I wish they had. There might be some nuggets buried in the text though. It would be easy to email them and ask.

At any rate, there were 62 double major, 26 single T, 8 T/L or L, 3 double T, 1 triple. So the majority were a higher risk.

I agree. Unless close to all 26 T were in the non compliant group and close to all 8 T/L or L were in the compliant group simultaneously, I think the data might be okay from the standpoint of that issue. But since there is something known about this issue, I don't know why the peer reviewers don't insist on clear statements upfront on this. We do have some data on this.


That number is correct. It does come from a table and is mentioned in the text. It's just 68% of the curves with risser 0 or 1 and 20-29 (deg) progressed.


What if it is 68% +/- 100%? What is it is 68% +/- 300%? Is there a point at which it would matter in your mind? You can average a very rangy set of numbers and get an average but what does it mean if the variability is so high? I think this is how we can have a surgeon tell a woman who was in the low 30* at maturity that it isn't unusual for someone like that to reach surgical range as a young adult. That statement continues to floor me and I think some bracing decisions might be different if parents knew that.


I agree that the long-term results are still in question. But the results through skeletal maturation seem to be fairly solid. But I see your point and can see how problematic it is for any form of treatment/management that does not follow the patient until 35 and beyond.

I'm glad I am not in this field. It looks very dicey from here. I wish bracing wasn't such a hard treatment. Life is short.

skevimc
07-16-2010, 08:55 AM
Oh wow. Does that means they have data as long as about 8-10 years out. That would be very important. Or does it mean they just collected the last in-brace radiograph from patients who were recruited as far back as 1998 with nothing since for any of them?


They probably do have quite a bit of follow-up data. But this was my original point that they might not have IRB approval to report on that data. IRB's can be quite strict when it comes to data collection on patients. If it wasn't in their original consent form that they would/could collect follow-up data they have to go through IRB again. Some IRB's can be very easy to work with and others, not so much.



What if it is 68% +/- 100%? What is it is 68% +/- 300%? Is there a point at which it would matter in your mind? You can average a very rangy set of numbers and get an average but what does it mean if the variability is so high?


I'm not sure what you're saying here. Out of their patients who fit in that category, 68% progressed. This is an absolute number. I'm unclear how this could be a range, unless this is some math trick of which I'm unaware. Which definitely happens. :o



I'm glad I am not in this field. It looks very dicey from here. I wish bracing wasn't such a hard treatment. Life is short.

From my point of view, it's not the 'treatment' that is hard (easy for me to say right??). It's the follow-up. Scoliosis can get lumped into the other diseases that are life long conditions. Regardless of what happens until skeletal maturity there will still be an adult with scoliosis. If the success or acceptance of any treatment is tied to the long-term success of that adult, the patients will simply outlive the researchers.

Ian Stokes and his collaborator (Aronnson ???) published a commentary on this article and made a good point about their research design. To me it seems the project was set up such that they simply tied their results to their clinical practice. That is, everyone who is treated there gets enrolled. They alluded to this by saying that 'the research design was unique and did not require additional funds to complete'. (Or something like that). I might be misinterpreting what that means though.

Sherie
07-16-2010, 09:47 AM
As I read the article, it seems to be a new study i.e. patient population. However, the patients were recruited between 1998 and 2000. If this group published on the same data I can't find it and they don't refer to that in the introduction. The whole group published a paper in 1997 comparing Boston to Charleston and the lead author (Katz) published something in 2001 but that was a retrospective study.

All patients were risser 2 or less and between 25° and 45°. X-rays taken every 4 months out of brace. All patients were followed until skeletal maturity. Failure was >6° progression or progression to surgery.

They do a fairly complex analysis linking brace wear to progression and stratifying by tri-radiate cartilage, risser, time of day the brace is worn, compliance and total number of hours of brace wear.

Of the 100 patients, 50 progressed and 50 did not. Of the 50 that did progress, 28 had surgery. The non-sugical group had a significantly higher number of daily brace wear (10.6 v 7.2), total number of braced hours (5002 v 2552), and percent compliance (42.4 v 24.4). These numbers include the non-progression group as well, i.e. 28 had surgery and 72 did not and 22 of the 72 with no surgery had progression. It would be interesting to see the analysis of the surgical v non-surgical in the progressing group.

The group that had the highest number of progressions was the risser 0 group. The risser 0 non-progressive group had a significantly higher number of daily brace wear than the progressive group (9.9 v 5.2).

The article goes on and on. Lots of statistics but the data seems to be fairly clearly presented, that is, they don't seem to be massaging the data too much. There are a lot of more detailed results in the text, but requires careful reading. Of interest.



The latest follow-up date isn't mentioned, but the patients were recruited at least 10 years ago. So it's not a huge jump to say these have remained stable after brace treatment. However, I do wish they would present that data. But it's possible they didn't have IRB approval for that.

Thank you for an intelligent and informed review of the article.

Sherie
07-16-2010, 10:31 AM
For anyone doubting the validity of this study because of all the extraneous double talk on this thread, US News just named TSRH #2 best orthopedic hospital in the nation.

http://health.usnews.com/best-hospitals/pediatric-rankings/orthopedics

Pooka1
07-16-2010, 12:16 PM
I'm not sure what you're saying here. Out of their patients who fit in that category, 68% progressed. This is an absolute number. I'm unclear how this could be a range, unless this is some math trick of which I'm unaware. Which definitely happens. :o

Oh sorry. I was referring to the table of historical risks for each combination of curve magnitude and Risser. The data they compared their data to (bad sentence!). That needs error bars and I don't think it has them especially since I don't think many patients were used to develop the percentage. On the other hand, the fact that this study found the identical percentage is consistent with small error bars.


Ian Stokes and his collaborator (Aronnson ???) published a commentary on this article and made a good point about their research design. To me it seems the project was set up such that they simply tied their results to their clinical practice. That is, everyone who is treated there gets enrolled. They alluded to this by saying that 'the research design was unique and did not require additional funds to complete'. (Or something like that). I might be misinterpreting what that means though.

If you are correct, that is a very robust design in my opinion. But I wonder if it can be right given the distribution of curve types doesn't seem to match that in the population (i.e., the majority were double majors whereas the majority of all curves is T as far as I know. ). If that is correct then this particular sample patient population may not reflect the general population. Who knows.

skevimc
07-16-2010, 01:00 PM
Oh sorry. I was referring to the table of historical risks for each combination of curve magnitude and Risser. The data they compared their data to (bad sentence!). That needs error bars and I don't think it has them especially since I don't think many patients were used to develop the percentage. On the other hand, the fact that this study found the identical percentage is consistent with small error bars.


Not to belabor the point. But I was referring to the historical data as well. The 68% number is explicitly stated in a table and the text for curves 20-29 and risser 0 or 1 in the Lonstein and Carlson 1984 article. I'm not sure how this would have error bars.



If you are correct, that is a very robust design in my opinion. But I wonder if it can be right given the distribution of curve types doesn't seem to match that in the population (i.e., the majority were double majors whereas the majority of all curves is T as far as I know. ). If that is correct then this particular sample patient population may not reflect the general population. Who knows.

It was set-up as an "intent-to-treat" design. So anyone who was prescribed a Boston brace in that time would be asked to participate in the study. So the curve demographics would heavily favor those curves for which a Boston would be most appropriate. My assumption is that other patients were prescribed other brace types and thus were not approached to be in the study. In the discussion they mention that a weakness of the study is they looked at only one brace type. And in the future they would include additional types now that the heat sensors are easier to apply and so compliance can be recorded.

Pooka1
07-16-2010, 01:07 PM
Not to belabor the point. But I was referring to the historical data as well. The 68% number is explicitly stated in a table and the text for curves 20-29 and risser 0 or 1 in the Lonstein and Carlson 1984 article. I'm not sure how this would have error bars.


Assume that 68% figure was determined from a group of 10 people. (ETA: Can't be 10, let's say 13 or something like that.) Would you obtain that 68% on the next group of 12 people? What about any new group of 50 people? Or an other group of 50 people.

I am not claiming the group was necessarily too small. I'm saying that the variability of this condition is so high that it it hard to imagine that 68% would be repeated if the figure was calculated for another small(ish?) group.

Or I might be completely wrong! I don't do this type of study.

hdugger
07-16-2010, 02:40 PM
I second Sherie's appreciation for Kevin's input. I don't think we can be reminded of the real constraints of medical research often enough.

It's *very* easy, when you're not actually doing research in this field, to fall into the trap of comparing the studies which are done to "the idea study," and to see incompetence/trickery in designs which don't match that ideal.

Studies in medical research simply are not ideal, often through no fault of the researchers involved. It's very difficult to ethically treat people and do great research at the same time, and it's equally difficult to get the money/participants/consent for the kind of ideal study I think we'd all like to see.

JessicaNoVa
07-16-2010, 08:57 PM
Hi Sherie...

The studies found that bracing works. However, since that time many specialists have agreed with Sharon, that since there is no control, they cannot tell for certain whether the braced kids might not have progressed without any treatment.

With that said, if I had a skeletally immature child with a curve between 25-40 degrees, I'd push them to wear a brace as much as possible.

Regards,
Linda

Thanks for saying this. My DD is two weeks into wearing her RSC brace and I really can't imagine doing "nothing" but waiting for her curves to get large enough to require surgery. Yes, that may happen anyway, but we're going to give this brace thing a try.

Granted, she's only 11 and is pretty self-confident. She even says that she "hardly notices" the brace anymore. Kudos to her.

Pooka1
07-16-2010, 09:30 PM
http://www.scoliosis.org/forum/showthread.php?t=9741

This is different group and they split the results into two articles, one very short for some reason.

It turns out to be an in-brace study.

bbrian35
07-16-2010, 10:51 PM
Thanks for the nice review skevimc! I don't understand what's so difficult to understand about 68% though. Seems fairly straight forward unless you are trying to make it something it isn't or trying to unmake what it is. I agree with Linda. I feel bracing for certain curves at low Risser is the choice I would make (and have made). Having my kid do it, it is not as traumatic and problematic as some may think.

LindaRacine
07-16-2010, 11:06 PM
it is not as traumatic and problematic as some may think.

Just curious Brian... were you braced as a child?

I assumed that it wasn't traumatic when I first started my support group, but after talking to enough adults who were braced as kids, I can tell you that it is traumatic for many kids.

--Linda

Ballet Mom
07-16-2010, 11:37 PM
http://www.scoliosis.org/forum/showthread.php?t=9741

This is different group and they split the results into two articles, one very short for some reason.

It turns out to be an in-brace study.


Hi to all my old friends! Just checking in and I see an old post of mine has been brought up.

I took a couple of seconds to google the name of the research paper and came up with the actual study mentioned above (The Association Between Brace Compliance and Outcome for Patients With Idiopathic Scoliosis), as I hate disinformation.

Here's the actual study's verbiage:



The curve magnitude was measured by Cobb angle in
a whole-spine posteroanterior radiograph taken every 4 to 6
months out of the brace.


And here’s the link to the Journal of Pediatric Orthopedics in case anyone would like to read it for themselves. The quote comes from the second page of the document, which is actually page 421 in the Journal itself, second paragraph.

http://early-onset-scoliosis.com/Documents/BraceCompliance.pdf


I am not going to try to find the old studies that I posted many moons ago that showed that most moderate curves that were braced did not progress in adulthood, but instead tended to move towards the size of the Cobb angle at diagnosis and not greater. I’m sure you can find them for yourselves if you look for them.

For those who are interested, my daughter is doing very well, she’s still wearing a nighttime brace as she is still only Risser 2. At last month’s orthopedic appt, her Cobb angle of her thoracic curve was measured at 29 degrees and her compensatory curve had basically disappeared. Her doctor said that although they never say that curves are improved, hers looked really good. I certainly agreed. For those who don’t know, she was diagnosed with a 35 degree thoracic curve and a 21 degree compensatory curve at Risser 0 and twelve years of age. She is now fifteen. She had “grown” one inch from her last six month visit, although I believe some of that was due to the disappearance of her compensatory curve (which may be due to a powerful drug she was taking, not the brace, who knows?)

For those parents who wish to brace and the child will accept the brace, there is every reason to give your child a chance at bracing. I truly believe that. Good luck to all who are bracing.

Pooka1
07-17-2010, 06:28 AM
Thanks for the nice review skevimc! I don't understand what's so difficult to understand about 68% though. Seems fairly straight forward unless you are trying to make it something it isn't or trying to unmake what it is.

Many things that seem straight forward are not.

T and L curves are known to have a different progression risk. If you are dealing with small groups of patients and one group is stacked with L curves and the other is stacked with T curves, you would not expect to calculate the same risk of progression for each group with what is known.

This issue of inadvertently stacking T and L curves in various study cohorts is recognized as having invalidated other studies. Thus it is considered a very serious issue as far as I can tell.

You can't have one progression risk with a given Risser range and Cobb range without talking about the mix of T and L curves. I mean you can but it might not mean anything if the patients were inadvertently stacked in the historical and present paper.

skevimc
07-17-2010, 10:28 AM
Many things that seem straight forward are not.

T and L curves are known to have a different progression risk. If you are dealing with small groups of patients and one group is stacked with L curves and the other is stacked with T curves, you would not expect to calculate the same risk of progression for each group with what is known.

This issue of inadvertently stacking T and L curves in various study cohorts is recognized as having invalidated other studies. Thus it is considered a very serious issue as far as I can tell.

You can't have one progression risk with a given Risser range and Cobb range without talking about the mix of T and L curves. I mean you can but it might not mean anything if the patients were inadvertently stacked in the historical and present paper.

There's only 8 T/L or L curves in the entire study. I'd be very surprised if the group of non-progressive, risser 0-1, 20-29* curves were stacked with more than 1 of those 8. It certainly is possible. But then it's an amazing coincidence that they would have also wore their brace more hours per day than the other groups. This group also had a clear dose response for progression risk.

As far as the range is concerned. I understand how a range would be developed. Yes, it would be statically unlikely that two smallish groups to have the same progression risk. Which is why it's more convincing to me that two small groups, separated by a couple of decades would end up with the same approximate progression percentage. (progressing curves, risser 0-1, cobb 20-29, daily brace wear <7 hrs, ~68%).

Sherie
07-17-2010, 10:43 AM
Thanks for saying this. My DD is two weeks into wearing her RSC brace and I really can't imagine doing "nothing" but waiting for her curves to get large enough to require surgery. Yes, that may happen anyway, but we're going to give this brace thing a try.

Granted, she's only 11 and is pretty self-confident. She even says that she "hardly notices" the brace anymore. Kudos to her.

I agree with you 100%, doing nothing is the WORST option. Now that there's evidence that bracing can prevent progression (which is exactly what the study shows), I would do whatever it took to help my kid through this bracing period. It won't be easy, but will be well worth it if you can prevent surgery down the road. Good luck and good job for being a proactive parent.

Sherie
07-17-2010, 10:51 AM
For those who are interested, my daughter is doing very well, she’s still wearing a nighttime brace as she is still only Risser 2. At last month’s orthopedic appt, her Cobb angle of her thoracic curve was measured at 29 degrees and her compensatory curve had basically disappeared. Her doctor said that although they never say that curves are improved, hers looked really good. I certainly agreed. For those who don’t know, she was diagnosed with a 35 degree thoracic curve and a 21 degree compensatory curve at Risser 0 and twelve years of age. She is now fifteen. She had “grown” one inch from her last six month visit, although I believe some of that was due to the disappearance of her compensatory curve (which may be due to a powerful drug she was taking, not the brace, who knows?)

For those parents who wish to brace and the child will accept the brace, there is every reason to give your child a chance at bracing. I truly believe that. Good luck to all who are bracing.

Those are encouraging results! I hope for continued success for your daughter and more personal stories like this should help new parents who are trying to decide what to do next.

There was a reason your old post was brought back to life, she was trying to detract from current events. Try not to rise to her bait, she just wants to continue her mindless posting. On the other hand, it did get you back here with those great results!:)

hdugger
07-17-2010, 12:10 PM
I've raised this as a concern before, and I guess I'm going to raise it again.

I think it's very dangerous to have heated back and forth over issues which fall well within the realm of standard treatment. If you've found a doctor that you trust, and that doctor is prescribing brace treatment by all means follow the treatment orders to the best of your ability.

I'm not certain why this would even be in doubt - barring some miracle advancement in the way medical research is performed, a professional who has seen hundreds of cases it the only person who's going to be able to make an informed recommendation about whether or not to brace your child.

I'm not addressing compliance issues here, and I understand that sometimes it simply is not possible to get your child to comply. In those cases, I'd take some relief in the fact that the research is a little hazy. But, if you're not facing some insurmountable hurdle, there is simply no reason not to accept the greater experiential wisdom of your doctor over whatever you might read in a patient's forum.

It's also reasonable to use the research to evaluate doctors. If you feel that the research points strongly in one direction or another, then you'd want to find a good doctor who you can see eye-to-eye with. But, if you absolutely trust your doctor, there is no reason whatsoever to second guess them on this issue any more then you'd second guess them on their post-op instructions.

I feel that this is a very serious concern on this forum. Heated back and forth on unknowns outside of the standard treatment realm is fine (although, I believe, not all that helpful to advancing knowledge) but I think we're exposing children to unnecessary harm by strongly suggesting to their parents that they should ignore their doctor's advice and start self-prescribing (or unprescribing) standard treatment. For the forum owners, I think this issue opens them up to liability issues as surely as having a large number of discussions dedicated to how one ought to be lifting 100 lb weights right after surgery regardless of doctor orders.

Use the research to inform your opinion about choosing doctors, but do *not* use it to ignore standard treatment advice from the doctor you've selected.

Pooka1
07-17-2010, 01:22 PM
There's only 8 T/L or L curves in the entire study. I'd be very surprised if the group of non-progressive, risser 0-1, 20-29* curves were stacked with more than 1 of those 8. It certainly is possible. But then it's an amazing coincidence that they would have also wore their brace more hours per day than the other groups. This group also had a clear dose response for progression risk.

I see that point.


As far as the range is concerned. I understand how a range would be developed. Yes, it would be statically unlikely that two smallish groups to have the same progression risk. Which is why it's more convincing to me that two small groups, separated by a couple of decades would end up with the same approximate progression percentage. (progressing curves, risser 0-1, cobb 20-29, daily brace wear <7 hrs, ~68%).

Yes. I think that says both risks were developed in similar patient cohorts with few L curves. This is of course not my field but I can read and when this issue of different propensity to progress between T and L curves was shown, it was very serious. I know you are aware of this but I'll explain for those who are not...

The inadvertent stacking of T and L curves in different treatment categories was cited as one of the main reasons a large controlled study was invalidated because by sheer bad luck, most of the T curves were in the watch and wait and most of the L curves were braced if I recall. The bottom line conclusion that bracing worked was invalidated because of this which of course isn't to say they proved bracing can't work. This state of affairs drove Concerned Dad to despair, too. :(

I hope no papers are published without controlling for this. And the real take home is this is one of many confounders that has been identified. Another potential one is connective tissue disorder patients. Yet another is compliance. Yet another is skill of the orthotist. Yet another is progression after maturity and what might control that. There are almost certainly unidentified confounders yet to be identified. Bracing may work but it is reasonable to suggest nobody will ever be able to show it cleanly. It's a shame it is such a hard treatment given this situation.

flerc
07-17-2010, 01:31 PM
Use the research to inform your opinion about choosing doctors, but do *not* use it to ignore standard treatment advice from the doctor you've selected.

Hi hdugger, I want to ask you about what you said, but this thread is about bracing, and focus should not to be lost, so I wrote the question in this thread: http://www.scoliosis.org/forum/showthread.php?t=10900
It seems that there is not a moderator doing this job, so I do it by myself.

Regards

Sherie
07-17-2010, 01:53 PM
I've raised this as a concern before, and I guess I'm going to raise it again.

I think it's very dangerous to have heated back and forth over issues which fall well within the realm of standard treatment. If you've found a doctor that you trust, and that doctor is prescribing brace treatment by all means follow the treatment orders to the best of your ability.

I'm not certain why this would even be in doubt - barring some miracle advancement in the way medical research is performed, a professional who has seen hundreds of cases it the only person who's going to be able to make an informed recommendation about whether or not to brace your child.

I'm not addressing compliance issues here, and I understand that sometimes it simply is not possible to get your child to comply. In those cases, I'd take some relief in the fact that the research is a little hazy. But, if you're not facing some insurmountable hurdle, there is simply no reason not to accept the greater experiential wisdom of your doctor over whatever you might read in a patient's forum.

It's also reasonable to use the research to evaluate doctors. If you feel that the research points strongly in one direction or another, then you'd want to find a good doctor who you can see eye-to-eye with. But, if you absolutely trust your doctor, there is no reason whatsoever to second guess them on this issue any more then you'd second guess them on their post-op instructions.

I feel that this is a very serious concern on this forum. Heated back and forth on unknowns outside of the standard treatment realm is fine (although, I believe, not all that helpful to advancing knowledge) but I think we're exposing children to unnecessary harm by strongly suggesting to their parents that they should ignore their doctor's advice and start self-prescribing (or unprescribing) standard treatment. For the forum owners, I think this issue opens them up to liability issues as surely as having a large number of discussions dedicated to how one ought to be lifting 100 lb weights right after surgery regardless of doctor orders.

Use the research to inform your opinion about choosing doctors, but do *not* use it to ignore standard treatment advice from the doctor you've selected.

Absolutely! Well said, you should make this a new thread under the parents forum. I think there are certain individuals here who think they know more than the medical profession.

As I pointed out, TSRH treats more than 6000 cases of scoliosis/year! Who could possibly be more qualified to carry out research?

We went to 4 surgeons, all of them advocated bracing if the patient is within acceptable and known guidelines.

Pooka1
07-17-2010, 02:42 PM
I think it's very dangerous to have heated back and forth over issues which fall well within the realm of standard treatment.

That issue is going to just have to get in line behind all the other more pressing (in my opinion) issues, most notably almost the entirety of the research section. It is also going to have to get behind the problem of certain lay claims about certain PT modalities as well as the advocacy of bracing curves that have virtually no chance of benefiting from it.

I'm sorry to say the last takes the cake over your concern and some of the others I mentioned in my opinion. A sense of proportion always.

I have great concerns about the misinformation and especially how people think the literature is far better than it is. I guess I have to keep occasionally posting that article explaining why most published research results are false. Science and especially medicine are very hard games as you well know.

Sherie
07-17-2010, 03:06 PM
That issue is going to just have to get in line behind all the other more pressing (in my opinion) issues, most notably almost the entirety of the research section. It is also going to have to get behind the problem of certain lay claims about certain PT modalities as well as the advocacy of bracing curves that have virtually no chance of benefiting from it.

I'm sorry to say the last takes the cake over your concern and some of the others I mentioned in my opinion. A sense of proportion always.

I have great concerns about the misinformation and especially how people think the literature is far better than it is. I guess I have to keep occasionally posting that article explaining why most published research results are false. Science and especially medicine are very hard games as you well know.

For the record, here's a quote from Sharon in a previous post:

"Corrections by folks who know what the heck they are talking about are (or should be) always welcome. That said, lay people with no relevant training need to carefully couch their comments to avoid appearing like they know what the heck they are talking about. The research section is a misasma in this regard for example. "

And also:

"And by the way, I have no relevant training so I'm in the "lay" group also. Everyone here is except McIntire on the topics he has clearly specified."

Sharon
You need to be very careful about what you're saying, you've admitted you're a "lay person" like the rest of us, therefore, you're no more qualified than anyone else on this forum to interpret the data. You're so called "concern" may be resulting in parents not pursuing or balking against prescribed medical care.

Pooka1
07-17-2010, 03:17 PM
Here's you bias again. You say I've admitted I'm a lay person. I suggest it is OBVIOUS I am not a surgeon. There is no admission required. I don't follow your thinking at all.

We have folks constantly claiming, surreally as against an actual expert(!), that torso rotation works every time. That same person posts the two papers by Mooney who claims in at least one that no bracing is ever necessary with torso rotation. I must have missed your objection EVERY TIME that statement was made and that paper was posted. Where was your concern about improperly swaying parents then? I think you are highly selective in your criticism.

We have people posting the most speculative stuff imaginable and some downright dangerous stuff (selenium). This is an actual toxicity concern but where was your concern?

While I could be forgiven for concluding you don't really have any concern for innocent parents and just want to bash me, I won't do that. I think you are concerned but don't understand the limitations of the literature. Claiming this study proves bracing works is premature. I'm concerned about that.

Susie*Bee
07-17-2010, 03:24 PM
I've raised this as a concern before, and I guess I'm going to raise it again.

I think it's very dangerous to have heated back and forth over issues which fall well within the realm of standard treatment. If you've found a doctor that you trust, and that doctor is prescribing brace treatment by all means follow the treatment orders to the best of your ability.

I'm not certain why this would even be in doubt - barring some miracle advancement in the way medical research is performed, a professional who has seen hundreds of cases it the only person who's going to be able to make an informed recommendation about whether or not to brace your child.

I'm not addressing compliance issues here, and I understand that sometimes it simply is not possible to get your child to comply. In those cases, I'd take some relief in the fact that the research is a little hazy. But, if you're not facing some insurmountable hurdle, there is simply no reason not to accept the greater experiential wisdom of your doctor over whatever you might read in a patient's forum.

It's also reasonable to use the research to evaluate doctors. If you feel that the research points strongly in one direction or another, then you'd want to find a good doctor who you can see eye-to-eye with. But, if you absolutely trust your doctor, there is no reason whatsoever to second guess them on this issue any more then you'd second guess them on their post-op instructions.

I feel that this is a very serious concern on this forum. Heated back and forth on unknowns outside of the standard treatment realm is fine (although, I believe, not all that helpful to advancing knowledge) but I think we're exposing children to unnecessary harm by strongly suggesting to their parents that they should ignore their doctor's advice and start self-prescribing (or unprescribing) standard treatment. For the forum owners, I think this issue opens them up to liability issues as surely as having a large number of discussions dedicated to how one ought to be lifting 100 lb weights right after surgery regardless of doctor orders.

Use the research to inform your opinion about choosing doctors, but do *not* use it to ignore standard treatment advice from the doctor you've selected.

I also concur that this was extremely well put. Kudos -- and many thanks-- to you, hdugger!

Susie*Bee
07-17-2010, 03:30 PM
Sharon, because of the very dogmatic way you present your arguments, even though I don't think your intent is to come off sounding like you believe you are an expert on the subject, most people are led to believe that is what you are. You might try a somewhat gentler approach sometime-- "from what I've read..." "this is how I interpret the data from that study...", etc. Just a suggestion... I know you have others' best interests at heart, but sometimes it comes across wrong.

Pooka1
07-17-2010, 03:44 PM
Sharon, because of the very dogmatic way you present your arguments, even though I don't think your intent is to come off sounding like you believe you are an expert on the subject, most people are led to believe that is what you are. You might try a somewhat gentler approach sometime-- "from what I've read..." "this is how I interpret the data from that study...", etc. Just a suggestion... I know you have others' best interests at heart, but sometimes it comes across wrong.

Okay thank you. I'll do a better job at that.

Susie*Bee
07-17-2010, 03:52 PM
You are very welcome. :)

Sherie
07-17-2010, 03:54 PM
Here's you bias again. You say I've admitted I'm a lay person. I suggest it is OBVIOUS I am not a surgeon. There is no admission required. I don't follow your thinking at all.

We have folks constantly claiming, surreally as against an actual expert(!), that torso rotation works every time. That same person posts the two papers by Mooney who claims in at least one that no bracing is ever necessary with torso rotation. I must have missed your objection EVERY TIME that statement was made and that paper was posted. Where was your concern about improperly swaying parents then? I think you are highly selective in your criticism.

We have people posting the most speculative stuff imaginable and some downright dangerous stuff (selenium). This is an actual toxicity concern but where was your concern?

While I could be forgiven for concluding you don't really have any concern for innocent parents and just want to bash me, I won't do that. I think you are concerned but don't understand the limitations of the literature. Claiming this study proves bracing works is premature. I'm concerned about that.

First of all, nobody ever suggested you were a surgeon, how absurd! Now you're trying to twist and bias your own quotes! You made that statement when I said you were a scientist, which you vehemently denied ever making that claim, I could have sworn you were a scientific researcher the way you present yourself.

Yes, I'm on the attack now because I posted a very legitimate study by a renowned scoliosis institution and you immediately tried to debunk it with misleading information from the get go. Instead of taking the time to find out the actual facts, you started making false assumptions immediately, remember?

And as for this study, the claim is that bracing stops progression in a high percentage of compliant wearers, it is right there in black and white. Can't you interpret a simple statement?:confused:

hdugger
07-17-2010, 04:36 PM
I'm going to try shot #2 at this :)

There is a world of difference between suggesting that one might do something *in addition to what the doctor prescribes* and suggesting that one do *something contrary then what the doctor prescribes*

The first is firmly in the world of parental actions - where we make all manner of decisions about what we consider safe and healthy behavior for our children - while the other is clearly in the realm of *medical* decision - where we disregard our doctors clear instructions because we figure we know better then they.

Suggestion made within the parental realm are relatively safe. Try out exercises and diet changes. If anything seems risky, consult with a doctor. As parents we do this all the time, and we're not fit to parent if we can't make these kinds of decisions on our own. Suggestions made *counter to doctors orders* are *not* safe, and you follow them at potentially great risk to your children.

So, if your child has a bacterial infection and you visit a forum where they suggest that you might want to feed them yogurt while they're on antibiotics, that's clearly parent realm advice which is in addition to your doctor's orders. OTOH, if you go into the forum and they tell you not to take the antibiotics because they've read some research somewhere which suggests that antibiotics might not be effective, that's medical realm advice which lies in opposition to your doctors orders.

All of the participants on this forum are qualified to give the first kind of advice. None of them are qualified to give the second.

Pooka1
07-18-2010, 07:39 AM
First of all, nobody ever suggested you were a surgeon, how absurd! Now you're trying to twist and bias your own quotes! You made that statement when I said you were a scientist, which you vehemently denied ever making that claim, I could have sworn you were a scientific researcher the way you present yourself.

I am a research scientist who holds a doctorate in a non-medical field. That makes me a lay person when it comes to scoliosis. Anyone who is not a board certified orthopedic surgeon is a lay person when it comes to treating scoliosis (until McIntire or someone shows a muscle physiology approach works or something like that). I could hold ten science doctorates in ten non-medical fields and be a top researcher in each one (impossible!) and still be a lay person at scoliosis. These are separate fields of knowledge though they all (hopefully!) are using the scientific method. Although the are separate, some thing are obvious like whether or not there is a control group. That's the level of detail I bring which is just basic science.

Pooka1
07-18-2010, 07:50 AM
I'm going to try shot #2 at this :)

There is a world of difference between suggesting that one might do something *in addition to what the doctor prescribes* and suggesting that one do *something contrary then what the doctor prescribes*


Here are some examples:

A parent goes with only torso rotation because they idolize Mooney and doesn't brace through the growth spurt as against advice from a surgeon.

A parent decided to use Spincor as against the advice of a surgeon.

A parent decides to use a RCS brace or a Cheneau brace as against he advice of a surgeon to use a Boston.

A parent feeds their child potentially toxic supplemental Selenium as against the advice of probably all doctors.

As far as I can tell, if a parent chooses not to brace as against a surgeon's advice after reading this forum, the most likely outcome is that they were not over-treated. The second most likely outcome is that the brace would have failed anyway. The third most likely outcome is that the brace will appear to hold the curve at least at first but maybe forever.

Now compare that to acute selenium poisoning.

You and I are simply going to disagree on where the real dangers are on this forum.

ETA: I am addressing AIS in my comments here. Other forms are a different ball game but I will add parents who choose VBS over brace as against surgeon's advice. That's looking more and more like a good parent call.

Sherie
07-18-2010, 07:58 AM
I am a research scientist who holds a doctorate in a non-medical field. That makes me a lay person when it comes to scoliosis. Anyone who is not a board certified orthopedic surgeon is a lay person when it comes to treating scoliosis (until McIntire or someone shows a muscle physiology approach works or something like that). I could hold ten science doctorates in ten non-medical fields and be a top researcher in each one (impossible!) and still be a lay person at scoliosis. These are separate fields of knowledge though they all (hopefully!) are using the scientific method. Although the are separate, some thing are obvious like whether or not there is a control group. That's the level of detail I bring which is just basic science.

Then why did you deny being a scientist and calling me a liar?

Why did you make so many false assumptions at the beginning of this thread if you are so well educated in research? That's very dangerous.

Pooka1
07-18-2010, 08:05 AM
Then why did you deny being a scientist and calling me a liar?

Why did you make so many false assumptions at the beginning of this thread if you are so well educated in research? That's very dangerous.

You are very confused. Your conclusions are not even a little bit right.

Re-read exactly what you and I wrote.

Pooka1
07-18-2010, 08:20 AM
Here is the exchange... I was referring to the "all-knowing" part which would be a lie if I or any scientist claimed. You have to read past the first two sentences to know I was referring to that part although I admit that could have been clearer. Then it would be obvious I was not referring to the "scientist" part. It is very offensive to accuse a scientist of thinking they are all-knowing in in fact scientists are the most likely folks to know the limits of knowledge in any one field. "The more you know the less you know." I have no reason to deny being a research scientist... it is a respectable career and it keeps me off the streets. :)

Sherie:

So now you're saying that you're not this all-knowing scientist? You've made this claim many times.

Sharon:

This is a lie. I challenge you to find a post where I claim this even once much less "many times." No scientist is all-knowing. In fact most have learned that the more you know the less you know. So basically you are projecting your ignorance of this topic onto me and I dont appreciate it. Please cut it out.

Ask yourself about the quality of your arguments when you need to start lying to make your point.

Ballet Mom
07-18-2010, 10:57 AM
Here are some examples:

A parent goes with only torso rotation because they idolize Mooney and doesn't brace through the growth spurt as against advice from a surgeon.

/
/

As far as I can tell, if a parent chooses not to brace as against a surgeon's advice after reading this forum, the most likely outcome is that they were not over-treated. The second most likely outcome is that the brace would have failed anyway. The third most likely outcome is that the brace will appear to hold the curve at least at first but maybe forever.



In actuality, Dr. Mooney was a well-respected orthopedic surgeon, if I can jog your memory.

And I disagree with your placement of the outcomes. I have read many of these scientific studies and don't come up with the same placement of results as you. I think in all brace studies, bracing stands up very well to no bracing.

Let me guess, are you a climate scientist? They seem to have their result already figured out and fit their "science" to support their view.

And I certainly don't a agree with your many times repeated belief that only Ph.Ds in a certain field can figure out what is going on. That's a very self-serving belief and leads to great abuse as we must all then just accept what a few self-serving "elite" tell us.

Pooka1
07-18-2010, 11:06 AM
That's a very self-serving belief and leads to great abuse as we must all then just accept what a few self-serving "elite" tell us.

Science is based on evidence not revelation. You want to keep bringing it down to the level of belief.

The evidence for say a few billion year old earth or evolution is out there and is accessible to everyone. You have two technical degrees, one graduate, IIRC. That is more than sufficient to understand the evidence for these things or really any technical/scientific evidence at least in broad outline. You do not have to rely on a scientific elite though I admit people with much less technical training than you might.

The point is science does not require belief, it requires evidence. Nobody has to believe any elite scientists nor should they. They should look at the evidence themselves and not blindly believe any scientific claim. They are required to understand the evidence if they want to deny it though and have scientific reasons for doing so.

I'm very glad your daughter has improved. Also, I have dealt with some of the acne drugs with one of my daughters and they scare me. She couldn't remember to wear sunscreen and I think that was very dangerous. We stopped those meds.

hdugger
07-18-2010, 11:48 AM
As far as I can tell, if a parent chooses not to brace as against a surgeon's advice after reading this forum, the most likely outcome is that they were not over-treated. The second most likely outcome is that the brace would have failed anyway. The third most likely outcome is that the brace will appear to hold the curve at least at first but maybe forever.

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.

Sherie
07-18-2010, 11:49 AM
You are very confused. Your conclusions are not even a little bit right.

Re-read exactly what you and I wrote.

Umm, no, I'm not confused in the least. You denied being a scientist, as you quoted here yourself:

This is a lie. I challenge you to find a post where I claim this even once much less "many times.

Now you're claiming to be a scientific researcher???

Pooka1
07-18-2010, 11:58 AM
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.

The 70% unnecessarily treated, 20% failure, and 10% seemingly helped is from one of CD's posts which I think was quoted from some paper that reassessed the problems in the previous studies. Maybe he will comment. Anyway we do have a few controlled, albeit flawed studies showing a large majority of untreated controls having a similar outcome as braced patients. And we have many surgeons admitting the lack of controls in studies has undermines claims of bracing efficacy.

The fact that bracing certain curves remains a standard of care in the face of that is just uncanny as Dolan comments. If surgeons brace in the face of no good evidence it is because it is the standard of care, not because they are missing evidence.

There might be some surgeons who think bracing works but I doubt you'll find one who claims to have very good evidence it works. Everyone is dealing with the same literature.

Sherie
07-18-2010, 12:07 PM
Here are some examples:


ETA: I am addressing AIS in my comments here. Other forms are a different ball game but I will add parents who choose VBS over brace as against surgeon's advice. That's looking more and more like a good parent call.

I think this is very revealing of your intentions. It appears to me that in your mind, the only viable options are surgical. VBS is a surgical procedure wherein they attempt to hold the curve via internal "bracing". All of the patients are sub-surgical level, therefore I will use the same argument against it that you have against bracing; that some of these patients may never progress (an unknown population) and thus, have had this procedure unnecessarily. An extremely invasive procedure not without risk of complications as in all surgeries. In fact, I recently saw a post where a child's curve was progressing AFTER VBS.

VBS post-op curve progressing

So disappointed. We had our 8 week post-op visit after Vertebral Body Stapling of a double curve. The best success rate (approximately 80%) is when both curves are less than 20 degrees at the first post-op film, 4 to 6 weeks after the surgery. This success rate drops dramatically if the curves are greater than 20 degrees at first follow-up. My 11 year old daughter's first post-op film was 23* thoracic and 16* lumbar.

We were glad the lumbar curve was less than 20, and were hoping that over time, and with growth, her thoracic curve would start to straighten.

The thoracic curve is stable, but the lumbar curve has increased 5 degrees in 4 weeks, and is now 21*.

Our spine surgeon did not recommend bracing at this point, although that is the protocol at Shriner's in PA. It is upsetting, because the reason we went through this major surgery (and all of its subsequent complications) is because my daughter could not tolerate bracing.

We are scheduled for another follow-up in 3 months, and hopefully there will be no further progression.

I find this extremely odd that you would find it acceptable to go against the primary surgeons advice and pursue VBS but not pursue non-surgical procedures???

Pooka1
07-18-2010, 12:12 PM
I have made that point that since VBS appears to work better on L versus T curves that there is some question that it is better than watching and waiting, at least for L curves (ETA and maybe for all curves).

There are plenty of questions surrounding VBS. VBS hasn't been around nearly as long as bracing which is mot a point in favor of bracing by the way.

For a typical JIS case who is looking at years and years of brace wear, parents have to decide if they want to try VBS.

hdugger
07-18-2010, 12:17 PM
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.

flerc
07-18-2010, 12:38 PM
The point is science does not require belief, it requires evidence.

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

Pooka1
07-18-2010, 01:30 PM
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
07-18-2010, 01:37 PM
Sharon I made you a question here http://www.scoliosis.org/forum/showthread.php?t=10900
I don´t 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
07-18-2010, 01:52 PM
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/showpost.php?p=82544&postcount=7

hdugger
07-18-2010, 02:19 PM
Here's the cite...

http://www.scoliosis.org/forum/showpost.php?p=82544&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
07-18-2010, 02:26 PM
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
07-18-2010, 02:42 PM
Here's the cite...

http://www.scoliosis.org/forum/showpost.php?p=82544&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/showpost.php?p=82613&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
07-18-2010, 02:52 PM
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
07-18-2010, 02:58 PM
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
07-18-2010, 03:08 PM
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
07-18-2010, 03:20 PM
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
07-18-2010, 03:35 PM
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
07-18-2010, 05:02 PM
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
07-18-2010, 05:28 PM
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
07-18-2010, 05:31 PM
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
07-18-2010, 05:39 PM
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.

flerc
07-18-2010, 06:27 PM
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.

It´s right what you are doing, because not exists such warnings.
At least I don´t see any warning in the feet of every section,.. posts (even news) of this forum, like here: http://escoliosis.org/escoforo/index.php?board=6.0 (Debes saber, en general, que los mensajes son opiniones de ...)

Pooka1
07-18-2010, 07:10 PM
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?

Yes that is true but I think the situation in the research section is out of hand and has resisted being brought under control. The research section should be masked or deleted or something.

Different people have identified different dangers and threats but they mostly concern the research section. People don't know what they don't know and it's scary to read some of these things. Everyone is a lay person here except McIntire in his field of expertise.

But the main problem in my opinion is people think the journal articles are better than they are. That is the single most dangerous aspect here in my opinion by far. If we could know people are approaching everything with skepticism, it wouldn't such a concern but that is hardly ever the case with anything, not just scoliosis research. If we could count on skepticism, people wouldn't have to bang on an on about worrying about innocent parents and children. But we can't. That's why I would advocate for masking the research section.

skevimc
07-18-2010, 09:27 PM
Wow.. Quite the little pressure cooker we have here.

One really difficult thing I've noticed with scoliosis research is finding appropriate treatment groups as well as appropriate controls. As has been mentioned, stacking, inadvertently, treatment groups with certain types of curves used to not be that big of a deal. Or rather, it wasn't really understood how big of a deal it really is. That is, it has been shown in several different types of articles that there are different progression risks for nearly every category imaginable. risser, skeletal maturity, chronological age, curve magnitude, vertebral rotation, curve type, and on and on and on. Having two perfectly matched groups will be nearly impossible. Doesn't mean it shouldn't be attempted and certainly doesn't mean that this shouldn't come out very clearly in the discussion. But it does paint a very grim picture for the relative success of any treatment study that isn't well funded or doesn't have a very progressive clinic that is willing to forgo some 'profit' in order to move the field forward. Like the current study. Those who received the Boston brace were given the brace free of charge. I'm not sure how that worked because it was said that the study didn't cost extra.

At any rate, based on what we now know about progression risk, just about any study published in the last 5 years could be completely negated or at least heavily footnoted. Nothing will ever work 100% of the time and nothing will ever completely outline the full risk for progression. I would love to be proven wrong about that. There are just simply too many variables to completely control for. And once we control for those, another study will be published showing that hair color affects progression risk thus negating all previous work that didn't control for hair color.

Patients, families, doctors, researchers, therapists, orthotists, lay, expert, etc... will ultimately pick something they like and will probably stick with it. Changing their minds is incredibly difficult despite what studies say. And nearly everyone will have a scientific leg to stand on because every study will have some type of variable that is not controlled. Being purely objective is probably as difficult as designing a flawless study. I see it happen all the time. It really is enough to drive you crazy. In fact, I'm reminded of what Dr. Asher always told me. "Don't go into scoliosis research. It will drive you crazy". I would amend that to say "Don't go into 'clinical' research. It will drive you crazy".

flerc
07-19-2010, 09:21 AM
Yes that is true but I think the situation in the research section is out of hand and has resisted being brought under control. The research section should be masked or deleted or something.

Different people have identified different dangers and threats but they mostly concern the research section. People don't know what they don't know and it's scary to read some of these things. Everyone is a lay person here except McIntire in his field of expertise.

But the main problem in my opinion is people think the journal articles are better than they are. That is the single most dangerous aspect here in my opinion by far. If we could know people are approaching everything with skepticism, it wouldn't such a concern but that is hardly ever the case with anything, not just scoliosis research. If we could count on skepticism, people wouldn't have to bang on an on about worrying about innocent parents and children. But we can't. That's why I would advocate for masking the research section.

I understand your point, but I disagree about what it should to be done.
You are contemplating only the negative side, but the positive side should not to be vanished.
The problem in fact is that someone could take a wrong desision based over something read in this forum. This could happens with all sections, even the surgical section, so, if research section should to be closed, then all this forum should to be closed too.
It would be really a more honest dession of the owners of this forum, instead to continues allowing that only one kind of information can be shared.

bbrian35
07-19-2010, 10:50 AM
Just curious Brian... were you braced as a child?

I assumed that it wasn't traumatic when I first started my support group, but after talking to enough adults who were braced as kids, I can tell you that it is traumatic for many kids.

--Linda

No, not me personally, but my dd as well as many others in a support group we regularly attend are. I wish I could quote many of the wonderful young ladies in the group, all of whom wear braces on an average on 18-22 hours a day. All will admit it was a difficult adjustment, but none feel as it negatively impacts them to the point of being traumatized based on their group input. The group is moderated by a therapist specializing in working with these girls. There are problems, most of them regard dressing or dealing with hot weather, and other things that don't sound as if they have a traumatic impact from what is routinely discussed. There are also many satirical comments made where the girls all giggle. They spend most of the meeting laughing and joking. Unless this is a way with dealing with post traumatic stress, I don't see a huge, negative impact. I see girls dealing with and accepting this as part of their life in a positive manner. I'm sure there are time that are worse than others that I may not see, but they all seem to accept this as something they need to do right now. They are quite inspiring. If they profess that it's not so bad, who am I to suggest they are wrong. Maybe the Milwaukee brace used in the past which was much more obvious could be part of what caused many adults to feel so bad about brace wearing. I do know that my kid's group of friends is supportive and wonderful in helping my daughter with things in school. It's like it's drawn them closer together. They have named her brace Captain Disaster. I don't have a sampling of 100's of people, only about 15, but none of the girls describe their life as problematic or traumatic due to the bracing. Maybe take a poll on the forum for kids in braces.

Pooka1
07-19-2010, 03:40 PM
http://www.ejbjs.org/cgi/eletters/92/6/1343#11803

Interesting.

Ballet Mom
07-19-2010, 03:58 PM
http://www.ejbjs.org/cgi/eletters/92/6/1343#11803

Interesting.

That is interesting...thanks for sharing.

Best quote:



Dr. Price notes that bracing is not benign, and we agree completely. The successful patients in the study wore their braces for more than 12 hours per day averaged over 18 months; no small task. We in no way imply that bracing is easy, just that it is effective. At least now when we encourage a patient to wear the brace, we have evidence that it is worth the effort, and we have some concept of the required daily hours of wear.

John A. Herring, MD, http://www.tsrhc.org/staff-directory-orthopedic.htm
Orthopedic Surgeon
Texas Scottish Rite Hospital for Children, Dallas, Texas,
Donald Katz, BS, CO, Richard Browne, PhD, Derek Kelly, MD, and John Birch, MD

Pooka1
07-19-2010, 06:47 PM
http://www.ejbjs.org/cgi/data/92/6/1343/DC1/1

The first graph needs confidence intervals. It's possible those are all the same curve within the precision.

Given the complete overlap in the (one sigma?) error bars, I don't see how they can say the brace wear time effect on Cobb was different between the three groups. In my field, when I see bar graphs like that with complete error bar overlap I say there is no difference between treatments.

So if those are one sigma bars, looking at the last set of bars (Final)...

1. for >12 hours wear, the average ~33* and 68% of the time the angle will fall between ~22* and ~44*.

2. for <7 hours wear, the average ~44* and 68% of the time the angle will fall between 34* and ~54*.

So 37% of the time (more than a third of the time) the angle will fall outside those ranges. Plus it becomes somewhat one-tailed at some point because you get into very small angles that wouldn't be braced at all. Thus there is a huge overlap in the dependent variable making it hard to predict the final angle from hours of wear.

There is some tendency towards a smaller average angle at the final point but it is hard to justify 12 versus 7 hours of wear with that amount of variability.

So the averages are different but the variability is such that it is hard to make any comment other than the different treatments are so variable that the outcomes overlap. I think this was mentioned earlier by Pnuttro when she stated the range in brace wear for the curves that progressed was huge and nearly completely overlapped the range in brace wear for curves that didn't progress.

This would be cleaner I think if they at least broke out the curve types. And at that point it might be that some of these groups have only a few kids. There were only 100 total and 50 progressed and 50 didn't.

Pooka1
07-19-2010, 06:48 PM
http://www.ejbjs.org/Comments/2010/cp_jun10_aronsson.dtl

Pooka1
07-19-2010, 08:35 PM
This point is from the commentary...


There are some methodological aspects of note. While substantial attention is given to accurate measurement of brace wear, the Cobb angle, which is the dependent variable, remains a potential Achilles heel of the study. The Cobb angle must be measured with great care from a given radiograph to achieve the study's threshold precision, indicating a 6° change. The patient's spinal shape in any one radiograph depends on several factors, including posture, time of day5, and patient positioning for the radiograph. Because the spine is flexible, the Cobb angle is a "moving target" that does not distinguish between the vertebral and disc components of the scoliosis deformity.

Now if each of these Cobb angle measurements (hundreds of times considering all the patients over time) is not one number for each measurement but instead a range of numbers as this paragraph is indicating (and as we know anyway). When you carry this plus or minus "error" through, it's going to muddy the picture even more. If they formally included a +/- range in the line and bar graphs it would have the effect of making the error bars even wider and making it more difficult than it was already to predict a Cobb angle from brace wear with any confidence.

The other thing is that the commentary and McIntire both mentioned the complexity of the data analysis. That is consistent with many variables, interacting in perhaps different ways (additive, multiplicative, etc.), are determining the final Cobb angle or that if there is one main variable, it wasn't one of the things they studied. It suggests that a clear relation between any one of the variables (say chrono age) is not straight-forwardly linked to progression risk and you have to parse the data in various ways to get a significant relation. And what they ended up with was a huge variation in angle although the central tendencies of the various sub groups were different.

Hypo numbers that characterize the trend follow...

It's like saying the progression risk of wearing the brace 12 hours is 50% +/- 5% versus saying the risk is 50% +/- 100%. Both ranges have the same average but the predictive capability of the first is far better than the second.

It's like telling a kid if they wear the brace for 12 or more hours they have a 40% chance of progression but if they wear it only 7 hours they have a 50% or 60% chance of progression. Nobody can parse that in real life.

Also, I notice the top category is 12 hours (or more). That is very interesting given that some kids were told to wear the brace 23 hours (or something like that). This might mean one of two things... 12 hours is really all that is needed and kids should never be told to wear a brace more than that. Alternatively, it might mean they had too few kids wearing the brace much more than 12 hours to make any statement about efficacy. Both results would be interesting. If someone has the paper, can you see if they address that?

Last, I don't understand how they didn't break out the data for curve type. Maybe they did and it didn't show a pattern. Or maybe they didn't and missed if the T curves behaved one way and the double majors behaved another. I just find it amazing if they didn't address that at all.

OR NOT TO ALL OF WHAT I WROTE! (disclaimer to satisfy hdugger).

skevimc
07-19-2010, 11:40 PM
Given the complete overlap in the (one sigma?) error bars, I don't see how they can say the brace wear time effect on Cobb was different between the three groups. In my field, when I see bar graphs like that with complete error bar overlap I say there is no difference between treatments.

So if those are one sigma bars, looking at the last set of bars (Final)...

1. for >12 hours wear, the average ~33* and 68% of the time the angle will fall between ~22* and ~44*.

2. for <7 hours wear, the average ~44* and 68% of the time the angle will fall between 34* and ~54*.



I see what you are saying. The statistical test was most likely a repeated measures. Therefore the variance between groups wouldn't be between the groups at the individual time points but rather the difference between the time points for each group. If you ran a basic t-test at each time point there probably wouldn't be a difference.

Pooka1
07-20-2010, 06:20 AM
I see what you are saying. The statistical test was most likely a repeated measures. Therefore the variance between groups wouldn't be between the groups at the individual time points but rather the difference between the time points for each group. If you ran a basic t-test at each time point there probably wouldn't be a difference.

Yes I agree it is what I highlighted in your comment.

And I think it is actually misleading if not wrong to lump things that you have evidence shouldn't be lumped like different curve types as in that bar graph. You don't know if the averages are being skewed away from a real central tendency if you broke out according to curve type. I mean you can physically do it and crunch out a number and it looks meaningful but it may not be.

Hopefully a medical statistician reviewed that and any paper with "complex" analyses.

And the bottom line is how are surgeons supposed to use this in what they tell patients? These are small differences in central tendency that are swamped out by the variability. It is hard to use these results.

What surgeons cannot do with this is tell patients that if they wear their brace for X hours they will not progress or if they don't wear their brace for X hours they will progress. The huge variability prevents them from saying that. Plus you add the known difference between T and L curves to these results and then the surgeon might say that although the average is slightly lower for 12 hours for 7 hours, that was developed by lumping curves. Your curve is an L so you would expect a lower risk of progression. Or your curve is T so your risk might more resemble the risk for people who wear the brace for 7 hours even if you wear it for 12.

Basically, I would say this study might (if it stands) provide some support for the surgeons who say they feel bracing is effective. But they have to translate that into something concrete for patients and parents and I don't think this study will help much in that regard.

I hate complex statistical analyses because it is very easy to fool yourself. When I design an experiment, if an answer doesn't come out cleanly one way or another, I redesign the experiment. For that bar graph, I would say the final results are not obviously different and move on. Some of my colleagues would run stats on the data until they eke out a small result. That is how I think this paper went.

And I am not blaming the authors in any way. I think this subject is inherently complex and there will be no clean answers with any study design. If there were clean answers we would have some indication of it by now after ~60 years of bracing.

The last thing is something that the commentary mentioned that is very bothersome... 60% of the girls were beyond the growth spurt. If you are testing something (bracing) with a mechanism that is supposed to be active during the growth spurt, you need to separate those two groups in the analysis or abandon the hypothesis that bracing works only during the growth spurt. Can't have both.

How did the kids do who were before or in the growth spurt versus past it? Isn't that a key question? And if there is no difference don't you have to abandon the hypothesis of how braces work? I am saying it is not enough to tease out differences. It is also important if the results don't support their original hypotheses if that is what happened. For example if the results don't show that kids braced through the entire growth spurt and didn't have a better outcome than kids who were braced after the growth spurt then something is wrong either with how people think bracing works or the data.

I still haven't found the paper but if they didn't find significant differences between subgroups for which we have some evidence there should be a difference and ended up creating sub groups in ways that may just maximize the difference between groups then it might just be a statistical anomaly with too few patients. The curve type mix of the patients does not resemble that of the general population (more double majors compared to T curves) and I hope they addressed that as it affects their conclusions and extrapolations to the general population.

Pooka1
07-20-2010, 09:24 AM
And by the way, with so few L curves in the study, I think it might be fair to say NONE of these results apply to L curves. None.

It may not apply to T curves if they are lost in the variabilty (or causing some of it).

It may apply mainly if not mostly to double major curves in skeletally mature patients.

PNUTTRO
07-20-2010, 09:44 AM
Sharon.
I think they didn't break it down more because the groups would be too small to be of any significance. It all could have been attributed to chance.

Also, even if the spread was significantly overlapped, it would have been nice to see the means. The mean probably would have shifted in favor of wearing the brace, but then again probably not significant because of the small sample size.

Keep in mind that all of these result pertain to a population. I think that bracing might help some kids, especially those that have a lot of growing to do. Every kid is different, and I think that trying the brace and getting good compliance is better than doing nothing, even if you end up going to surgery later. You never know where you will fall in the spectrum. Do you want to take the chance?

p

Pooka1
07-20-2010, 10:36 AM
Sharon.
I think they didn't break it down more because the groups would be too small to be of any significance. It all could have been attributed to chance.

Yes I bet you are correct. But then we have to ask what do these numbers mean if they are known to represent a mixed bag? Then chance comes in as to exactly how mixed that bag is and how the bag is mixed. I can calculate any number of numbers for my data but I know for a fact some do NOT mean anything. I can still calcualte them though.


Also, even if the spread was significantly overlapped, it would have been nice to see the means. The mean probably would have shifted in favor of wearing the brace, but then again probably not significant because of the small sample size.

Yes I again agree. But the goal here for patients and parents I think is the ability to predict outcome from brace compliance. When the small changes in means are swamped by the variabilty, the ability to predict is not significanly enhanced by this study, especially for L curves and possibly for all skeletally immature curves.


Keep in mind that all of these result pertain to a population. I think that bracing might help some kids, especially those that have a lot of growing to do.

And yet a majority of the study subjects were past the growth spurt.


Every kid is different, and I think that trying the brace and getting good compliance is better than doing nothing, even if you end up going to surgery later. You never know where you will fall in the spectrum. Do you want to take the chance?

p

Well, with the huge variability seen in this study, I'm tempted to say what I say about winning the lottery... the chances of winning are about the same whether you buy a ticket or not. :)

Now it's not quite that bad with this study but I just wonder what surgeons will say to patients now versus before on the basis of this study.

Did they try to determine how many patients would not have progressed anyway (no bracing)?

skevimc
07-20-2010, 12:26 PM
What surgeons cannot do with this is tell patients that if they wear their brace for X hours they will not progress or if they don't wear their brace for X hours they will progress. The huge variability prevents them from saying that.


What treatment for scoliosis exists where a doctor can say what you just suggested?



Plus you add the known difference between T and L curves to these results and then the surgeon might say that although the average is slightly lower for 12 hours for 7 hours, that was developed by lumping curves. Your curve is an L so you would expect a lower risk of progression. Or your curve is T so your risk might more resemble the risk for people who wear the brace for 7 hours even if you wear it for 12.


I think this is a moot point due to the low number of L curves in the study.



Basically, I would say this study might (if it stands) provide some support for the surgeons who say they feel bracing is effective. But they have to translate that into something concrete for patients and parents and I don't think this study will help much in that regard.


This is what the author said in the letter to the editor comment. That the paper provides some support to say "if you wear your brace for XX hours/day you stand the best chance". They aren't trying to suggest anything more than that.



I hate complex statistical analyses because it is very easy to fool yourself. When I design an experiment, if an answer doesn't come out cleanly one way or another, I redesign the experiment. For that bar graph, I would say the final results are not obviously different and move on. Some of my colleagues would run stats on the data until they eke out a small result. That is how I think this paper went.


Starting over isn't a luxury clinical studies have. A repeated measures ANOVA (the bar graph) isn't a complex statistical analysis.



The last thing is something that the commentary mentioned that is very bothersome... 60% of the girls were beyond the growth spurt. If you are testing something (bracing) with a mechanism that is supposed to be active during the growth spurt, you need to separate those two groups in the analysis or abandon the hypothesis that bracing works only during the growth spurt. Can't have both.


The growth spurt issue is a good point. I'm blanking on the exact reason but I think I'm remembering that they used skeletal maturity (TRC and risser) to link progression. Why do you think their hypothesis is 'bracing works only during the growth spurt'?

hdugger
07-20-2010, 12:49 PM
(posted this in the wrong thread)

I looked up Charles Price (the researcher disputing the validity of the Herring results), and it appears that he's "the lead investigator and research physician for scientific studies related to the Charleston Bending Brace" (according to this site - http://www.cbb.org/The-History-of-Side-Bending-2009.asp).

The Charleston Bending Brace is a night-time only brace. That is, a brace designed for exactly the kind of wear pattern (night only) which Herring's research claims is ineffective for slowing curve progression.

So, one might assume that Price has a dog in this fight.

Ballet Mom
07-20-2010, 01:26 PM
(posted this in the wrong thread)

I looked up Charles Price (the researcher disputing the validity of the Herring results), and it appears that he's "the lead investigator and research physician for scientific studies related to the Charleston Bending Brace" (according to this site - http://www.cbb.org/The-History-of-Side-Bending-2009.asp).

The Charleston Bending Brace is a night-time only brace. That is, a brace designed for exactly the kind of wear pattern (night only) which Herring's research claims is ineffective for slowing curve progression.

So, one might assume that Price has a dog in this fight.


I also posted a response to this in the other thread and will repost here for those who don't read other sections of this site. Sorry to any who have to read it twice! :-)
/
/

That's interesting about Dr. Price. I was also surprised that this study seemed to show that bracing at night wasn't as important as bracing before and after school.

My daughter was prescribed the Charleston bending brace when she was first diagnosed at 35 degrees, Risser 0, 12 years and pre-menarchal and progressing in front of my eyes, so I have nothing but good feelings about the Charleston brace. That brace stopped my daughter's curve cold.

Unfortunately, I think it was only luck, or exceptional skill on the part of her initial orthopedist that she was successful in the Charleston brace. Thirty-five degrees is the maximum size of curve to be used in the Charleston brace and she also had a 21 degree compensatory curve. Charlestons should only be used on a single curve. I think the only reason this brace worked on my daughter with this magnitude curve and the amount of progression is because she was very thin with a super-flexible spine and the brace managed to achieve over-correction with it.

After having read the studies on it, I actually went on a hunt for a full-time brace such as the Cheneau brace but didn't follow through because one of the orthopedists we visited convinced my daughter that she wouldn't want to wear a full-time brace!

Luckily, it seems to have all worked out although it would have been nice to see some of the curve reduction that these Cheneau braces seem to be able to give through growth...and my daughter has certainly had many years of growth since diagnosis. I won't complain though, and I certainly thank the orthopedists we went to for managing to get her through this really stressful time successfully.

If my daughter is one of the few who continue to progress after bracing due to her hyperlax ligaments....there is nothing I can do about that. But it was certainly worth the shot...and she has been able to continue ballet and performing all this time. And that is worth everything.

hdugger
07-20-2010, 02:14 PM
I haven't read the original report in detail, but my sense is that the researchers think the nighttime bracing is less effective (not that it isn't important).

Given that Price is still cited as the main researcher on the Charleston site, my guess is that his complaint with this research is that they're reporting a dose-dependent response. Unless he's somehow published some conflicting research, I'd interpret his complaint as stating that this research *underreports* the effectiveness of bracing, and that *even shorter bracing times* than those recommended in this research are effective.

I'm not a bracer (my child is an adult) but it might be worthwhile for someone who is still bracing to write to Dr. Price and have him clarify his letter.

hdugger
07-20-2010, 02:31 PM
Based on some more googling, I think I've understated Price's involvement with the Charleston brace. He's listed in several references as one of the developers of the brace, suggesting a financial involvement with its success.

Pooka1
07-20-2010, 02:39 PM
Based on some more googling, I think I've understated Price's involvement with the Charleston brace. He's listed in several references as one of the developers of the brace, suggesting a financial involvement with its success.

Oh wow.

On the one hand, I think that should have been mentioned in the disclosure.

On the other hand, I suspect most folks in this field know exactly who he is. Plus the third reference in his letter identifies him as someone possibly connected to the Charleston brace. I hope going to that reference includes reference that he is one of the developers.

So it's not like he is hiding anything but it could have been much clearer.

Pooka1
07-20-2010, 02:44 PM
What treatment for scoliosis exists where a doctor can say what you just suggested?

How do you think this will change how surgeons talk to patients if you think it will change how they talk to patients?


I think this is a moot point due to the low number of L curves in the study.

Yes. There were hardly any L curves so this study really doesn't address those curves.


This is what the author said in the letter to the editor comment. That the paper provides some support to say "if you wear your brace for XX hours/day you stand the best chance". They aren't trying to suggest anything more than that.

Yes that is technically true but I think folks think this study provides better predictive power than it does.


Starting over isn't a luxury clinical studies have. A repeated measures ANOVA (the bar graph) isn't a complex statistical analysis.

No I wasn't referring to that bar graph as complex. Bars graphs are simplicity itself. I was referring to your comments and those of the commentary.


The growth spurt issue is a good point. I'm blanking on the exact reason but I think I'm remembering that they used skeletal maturity (TRC and risser) to link progression. Why do you think their hypothesis is 'bracing works only during the growth spurt'?

Isn't that the claim of bracing and the reason why adults are not braced?

Ballet Mom
07-20-2010, 02:50 PM
I think in the reading that I've done, lumbar curves are much more successfully braced than other curves. This is true also in vertebral stapling. Therefore, it follows that any lumbar curves should be even more successful than the thoracic curves with bracing.

It seems to me it's a good thing there are mainly thoracic curves in the study, as those would be the hardest and most difficult to stop the progression in. It makes the study even better in my mind.

Pooka1
07-20-2010, 03:32 PM
I think in the reading that I've done, lumbar curves are much more successfully braced than other curves. This is true also in vertebral stapling. Therefore, it follows that any lumbar curves should be even more successful than the thoracic curves with bracing.

How do you rule out that they simply have a lower potential for progression which has been shown and is one of the main reasons invalidating one of the few controlled bracing studies.

Just because someone is wearing a brace doesn't mean it is doing anything. The few controlled studies seem to indicate that many kids would not have progressed anyway.

In the Q&A session for Betz's talk at the Posna 2009 talks ( IIRC) that you posted (one of the most informative/valuable posts ever by the way), Betz got this exact comment... a possible reason VBS appears to work better in L curves is that the risk of progression is lower for L curves versus other types of cuves whewre VBS has a lower efficacy. It's a good point and Betz can't in principle answer it with any specificity. I don't remember what he said... I'm guessing he conceded the point.

Just because someone is stapled doesn't mean the curve would have progressed absent the stapling.

Do you think this TSRH paper is sufficient to halt the BRAIST Study?

It will be interesting to see if that happens or if it doesn't happen. Either way.

Pooka1
07-20-2010, 03:55 PM
It seems to me it's a good thing there are mainly thoracic curves in the study, as those would be the hardest and most difficult to stop the progression in. It makes the study even better in my mind.

Forgot about this...

The majority by far were double major curves...

62 double major
26 single T
8 T/L or L
3 double T
1 triple.

And the majority of patients were skeletally mature per the commentary (which I have to read again).

I am not sure where double majors fall out in terms of progression risk but I think T curves have the highest risk. Anyone know?

To the extent that most curves are T, this study might be less applicable to the general population than if the patient population reflected the general population much more closely.

How prevalent are double majors compared to the other curve types anyway? Anyone know?

Ballet Mom
07-20-2010, 04:36 PM
Forgot about this...

The majority by far were double major curves...

62 double major
26 single T
8 T/L or L
3 double T
1 triple.

And the majority of patients were skeletally mature per the commentary (which I have to read again).

I am not sure where double majors fall out in terms of progression risk but I think T curves have the highest risk. Anyone know?

To the extent that most curves are T, this study might be less applicable to the general population than if the patient population reflected the general population much more closely.

How prevalent are double majors compared to the other curve types anyway? Anyone know?

In that case, they have been very conservative as double majors are the MOST LIKELY to progress, as I recall. I'm actually not going to look for data, because I'm done with that here.

If you can't trust someone whose research CV looks like this and is Chief of Staff of a major children's orthopedic center,

http://www.tsrhc.org/downloads/PDF/CVs/herring_2010.pdf

http://www.tsrhc.org/downloads/PDF/CVs/Fellows_Herring_1.pdf (please notice all the research journals he's editor and reviewer of,

or a woman who has cured untold numbers of children with scoliosis...who are you going to be willing to believe? Apparently you know better than all these renowned orthopedic surgeons. Apparently they're trying to pull the wool over these poor kids eyes and torture them, because they like to torture kids.

Pooka1
07-20-2010, 04:38 PM
Here's a Lenke study with over 600 consecutive AIS cases that were surgical...

http://www.ncbi.nlm.nih.gov/pubmed/11884908

Type 1, main thoracic (n = 305, 51%)
Type 2, double thoracic (n = 118, 20%)
Type 3, double major (n = 69, 11%)
Type 4, triple major (n = 19, 3%)
Type 5, thoracolumbar/lumbar (n = 74, 12%)
Type 6, thoracolumbar/lumbar-main thoracic (n = 17, 3%).

So of the curves that became surgical which is the end game here (i.e., avoiding fusion), half are T and only about 10% are double majors. Thus the study population which was almost 2/3 double major and only about 1/4 T, does not resemble the surgical cases at least.

For a worst case study, you would have to have at least half (and indeed all for absolute worst case) be T curves because half of his large consecutive surgical cohort was T.

So these are what becomes surgical but I want to also know what the prevalence is of all curves, not just the surgical ones. I can't seem to find a good reference for that. :confused:

Pooka1
07-20-2010, 04:40 PM
If you can't trust someone whose research CV looks like this and is Chief of Staff of a major children's orthopedic center,

The case of Linus Pauling invalidates this point.

Ballet Mom
07-20-2010, 04:43 PM
The case of Linus Pauling invalidates this point.

I don't agree.

Pooka1
07-20-2010, 05:19 PM
It is important to compare those surgical rates for curve type with general prevalence. I mean it could be that although double majors are only a small component of the surgical cases, it could still be the case that most of them progress.

I can't seem to find curve type prevalence in the general AIS population to compare.

There are two different questions to ask and answer.

skevimc
07-20-2010, 06:18 PM
How do you think this will change how surgeons talk to patients if you think it will change how they talk to patients?


I think people/doctors will read this article and interpret based on their current bias. Your assertion is that the huge variation in the study will not let doctors claim absolute effectiveness. And I'm saying that nothing has absolute effectiveness. Or at least, that's what I was asking, if anything claims absolute effectiveness. (Other than CLEAR of course.)



Yes that is technically true but I think folks think this study provides better predictive power than it does.


No doubt that what you are saying is true. But that's true with most studies, i.e. bias. This study is a pretty good one in that it is a prospective trial that does a great job of controlling for time in brace. They don't do a lot of tricks with their data to get the basic result, which is that the brace seems to have altered progression based on daily wear. Certainly more can be presented. The data can be stratified in a dozen different ways that will have various implications.

I guess my overall point with this study is that, out of a lot of crap that has been published, this study is a good one. It's certainly better than this.

http://scoliosis.org/forum/showthread.php?t=10027

And if everybody is being honest with their opinions and critiques of these two articles, it's clear where our biases are.

However, I will also say that I don't like bracing as an option. Some girls seem to handle it fine but others clearly don't. In fact, the impetus for the doctors funding the torso strength study was to find an alternative to bracing. But I digress.




No I wasn't referring to that bar graph as complex. Bars graphs are simplicity itself. I was referring to your comments and those of the commentary.


I guess I was assuming, based on your comment, you were implying that they needed a complex statistical concept to 'eke' out a small result. The logarithmic curves were definitely complex and to me have fairly little to offer other than identifying future directions, e.g. most effective time of day for bracing.



Isn't that the claim of bracing and the reason why adults are not braced?

I don't know. Certainly growth spurt is a major part of it but I think skeletal maturity gets as much credit. I think overall it's based on the apparent moldability of the bones.

Pooka1
07-20-2010, 08:08 PM
I think people/doctors will read this article and interpret based on their current bias. Your assertion is that the huge variation in the study will not let doctors claim absolute effectiveness. And I'm saying that nothing has absolute effectiveness. Or at least, that's what I was asking, if anything claims absolute effectiveness. (Other than CLEAR of course.)

Yes but some results have a lot less variation that that for heavens sake.

LOL on the Clear comment! You rock. :)


I guess my overall point with this study is that, out of a lot of crap that has been published, this study is a good one. It's certainly better than this.

http://scoliosis.org/forum/showthread.php?t=10027

Is the article available anywhere for free?

ETA: I mean the TSRH article, not the one you linked.


However, I will also say that I don't like bracing as an option. Some girls seem to handle it fine but others clearly don't. In fact, the impetus for the doctors funding the torso strength study was to find an alternative to bracing. But I digress.

Do you think this article is enough to immediately halt BRAIST on ethical grounds? Do you think the authors think so? I suspect not.


I guess I was assuming, based on your comment, you were implying that they needed a complex statistical concept to 'eke' out a small result. The logarithmic curves were definitely complex and to me have fairly little to offer other than identifying future directions, e.g. most effective time of day for bracing.


I haven't seen the article or the log curves but you have peaked my interest. That is going to be an area of scrutiny. :)


I don't know. Certainly growth spurt is a major part of it but I think skeletal maturity gets as much credit. I think overall it's based on the apparent moldability of the bones.

I apparently don't have these concept clear in my mind. Isn't it the case that skeletal maturity is basically the end of the adolescent growth spurt? I mean what do you think the point of mentioning that was in the commentary?

On another topic, I can't for the life of me find the prevalence of various types of curves in the AIS population. The Lenke study shows the prevalence of surgical curves but we need to know both pieces of information.

For example if half of T curves become surgical but 99% of double majors become surgical then this study might be a worst case given that double majors dominate to study cohort. But we would have to assume the Boston brace addresses both curve types with the same efficiency.

skevimc
07-21-2010, 12:37 AM
Is the article available anywhere for free?

ETA: I mean the TSRH article, not the one you linked.


Since I don't think the study was funded by NIH it's not covered under open access. It's possible if you wrote Katz directly he might send you a copy. I know anyone that contacts me I always send my stuff along whether they want it or not. It's my attempt at indoctrination.

BTW, what does ETA mean? I've seen you use it about 1000 times and I've thought and thought and thought about it and I can't figure it out.



Do you think this article is enough to immediately halt BRAIST on ethical grounds? Do you think the authors think so? I suspect not.


I honestly don't know enough about the BRAIST study. I've seen you all talk about it a lot on here but don't know a thing about it.



I apparently don't have these concept clear in my mind. Isn't it the case that skeletal maturity is basically the end of the adolescent growth spurt? I mean what do you think the point of mentioning that was in the commentary?


You can be done growing, but the growth spurt isn't something that can be prospectively measured. It's only possible to see it in retrospect. Whereas you can look at risser and TRC to see what the so called skeletal age is. This is when you have a 15 year old who is 2 years post menarchal but has a risser 1 or 2 but closed TRC. She's probably not going to grow anymore, but her growth plates haven't closed yet so things are still 'moldable'. So the biomechanical forces that influence scoliosis can still cause problems. Essentially, the risser and TRC are quantifiable from a progression stand point. The growth spurt is only quantifiable in retrospect and thus provides little prognostic value. Unless they keep careful height records at each 4 month visit. In which case you could see the height velocity. But still, there's a lot of variability.



On another topic, I can't for the life of me find the prevalence of various types of curves in the AIS population. The Lenke study shows the prevalence of surgical curves but we need to know both pieces of information.

For example if half of T curves become surgical but 99% of double majors become surgical then this study might be a worst case given that double majors dominate to study cohort. But we would have to assume the Boston brace addresses both curve types with the same efficiency.

The lonstein and carlson paper has progression risk for various curves. There was another study that was discussed on here a few months ago that had progression risk of various curves. I might be able to find it.

Pooka1
07-21-2010, 06:13 AM
BTW, what does ETA mean? I've seen you use it about 1000 times and I've thought and thought and thought about it and I can't figure it out.

Edited to add. It alerts the two or three people who read my posts that I made a change. :)


I honestly don't know enough about the BRAIST study. I've seen you all talk about it a lot on here but don't know a thing about it.

It's a prospective controlled bracing studying with about 20 medical centers participating. That's 20 medical centers who agree it is ethical to randomize kids to a control group.


You can be done growing, but the growth spurt isn't something that can be prospectively measured. It's only possible to see it in retrospect. Whereas you can look at risser and TRC to see what the so called skeletal age is. This is when you have a 15 year old who is 2 years post menarchal but has a risser 1 or 2 but closed TRC. She's probably not going to grow anymore, but her growth plates haven't closed yet so things are still 'moldable'. So the biomechanical forces that influence scoliosis can still cause problems. Essentially, the risser and TRC are quantifiable from a progression stand point. The growth spurt is only quantifiable in retrospect and thus provides little prognostic value. Unless they keep careful height records at each 4 month visit. In which case you could see the height velocity. But still, there's a lot of variability.

Okay I think I understand that (not sure!).

What I'm asking is the following:

1. Did they miss the growth spurt for a majority of the study subjects (determined any way you like)?

2. Is skeletal maturity typically achieved soon after the end of the growth spurt?


The lonstein and carlson paper has progression risk for various curves. There was another study that was discussed on here a few months ago that had progression risk of various curves. I might be able to find it.

What I don't understand is why this study was so loaded with double majors when they are not the most prevalent curve type which thoracic, both in general prevalence and surgical prevalence.

These can't be consecutive cases... they must have selected in a way that over-represented double majors w.r.t. their prevalence in the general population and in the surgical population. Now if double majors have a higher risk then that would make the study stronger given they have so many double majors. But then they have to assume the brace works with the same efficient on double majors and T curves. They would have to show that at some point... maybe they did. Did they show any data where curve type is broken out?

I may toddle over to a medical library and try to get the paper.

mariaf
07-21-2010, 06:32 AM
It alerts the two or three people who read my posts that I made a change. :)

You crack me up, Sharon. I'll go out on a limb and say the number is somewhat higher than two or three - LOL!

michael1960
07-21-2010, 08:06 AM
Well, it took some time this morning to read through all the comments on this thread. Very interesting discussion. I would like to add just a few points:

1. My daughter is almost 9 diagnosed when she was 7 1/2 (23 deg) and no treatment started until she was 8 (36 deg). She increased from 23 deg to 36 deg in 4 month period. The worse curve was T4-T12. (OCT 2009)

2. We started with SpineCor brace (recommendation from Children's Hospital pediatric orthopedic surgeon). Couple months later the T4-T12 curve was down to 30 deg. (JAN 2010)

3. We followed up with an intensive 2-week physical therapy session (8 hours per day). The T4-T12 curve was reduced to about 24 deg but the T5-T12 curve remained around 30 deg. (JAN 2010)

4. Couple months later she started wearing the Boston brace (recommendation from a VBS doctor). The T4-T12 was at 24 deg and the T5-T10 was about 30 deg (we maintained the curve improvements from the 2 week intensive physical therapy). My daughter wore the SpineCor to school and all sporting events and the Boston brace at night. This helps with brace compliance. Her "in brace" measurement was about 18 deg in the SpineCor and 13 deg in the Boston brace. (MAR 2010)

5. Three months later the T5-T10 (worse curve) was about 22 deg (out of brace 48 hours) and the T4-T12 was down to about 18 deg (out of brace 48 hrs). Her Boston "in brace" measurement was about 9 deg. (JUN 2010)

6. We did another two weeks of intensive physical therapy and the T5-T10 curve was reduced to about 18 deg (out of brace 48 hrs) and her Boston "in brace" measurement was reduced to about 3 deg (JUN 2010)

7. She is now wearing the SpineCor brace during the day, the Boston brace at night, and doing about 1-2 hours of physical therapy (at home) each day. We will continue this for the next 2-3 months until she has her next x-ray.

I assume most of this research discussion is regarding AIS research but for anyone reading this thread curve reduction (not only curve stabilization) is possible for JIS. I was told by several pediatric orthopedic surgeons that curve reduction was not possible.

In February 2010 my daughter was a candidate for VBS (staples with hybrid growing rod) but she is now not even considered a VBS (staples only) candidate anymore because she is below 25 deg and showing continued curve reduction.

We are at a very difficult point because on one hand we wanted VBS. We were working hard to get the curve down to 25 so she would be a VBS (stapling only, no hybrid rod) candidate. Now, being below 25 and showing curve reduction, she is no longer a VBS candidate. We truly felt VBS was the right decision (internal brace through skeleton maturity and maybe some benefits having an internal brace through adult life).

Now, a VBS doctor is suggesting that she do bracing instead (a plan I recommended back in February and was told it would not work). We are going to give bracing a chance, see how much reduction we can get, and monitor it closely so she does not bounce back up to 30+ and no longer be a VBS candidate (staples only). I was wondering whether his recommendation was based on some new study.

Of course, the big concern is that there are very few, if any, studies that support or show a reduction in a JIS curve (from 35+ to 15 deg) will remain stable with part-time/full-time bracing through skeleton maturity and beyond into adult life. The VBS doctor did say there were some studies that showed if a curve is reduced to 15-20 deg at skeleton maturity that it would not progress in adult life. I need to find this study (will be requesting from the VBS doctor). In addition, I wonder if that study was based on any JIS children who had already reached 35+ degrees, before reaching 15-20 deg through bracing. That would make it relevant, otherwise, probably not relevant.

One other comment. While I am a very big supporter of following the doctor's advice, the treatment we are following has not been recommended or suggested by any doctor. One says to wear the SpineCor. One says to wear the Boston brace. None, for the most part, support the wearing of two braces. And none, for the most part, see much benefit in physical therapy. We have seen at least 4 pediatric orthopedic surgeons, two chiropractors, and 4 orthotists (all specializing in scoliosis), who all have a different opinion on what works. And in most cases most of them do not support the other's recommendations.

And it is unfortunate, there are many young children who are at great risk of curve progression, who are following the advice of their doctor or some other scoliosis practitoner, who will never know of any other treatment, because his/her doctor does not believe in it, or is not familiar with it. I recently met two girls, one 9 with a 45 deg curve and another 12 with a 40 deg curve (both with curves progressing since last x-ray). The parents had never heard of VBS as an option and the pediatric orthopedic surgeon and chiropractor treating them never mentioned it to them. These are two girls who are on their way to spinal fusion. If they went to a VBS doctor they would both be considered a high priority.

While I have read many many research papers, I put a lot of trust in other parents who are getting results with different treatments. It is a very difficult balancing all the advice from: pediatric orthopedic surgeons, chiropractors, orthotists, physical therapists, other parents, forums, research papers, etc..

Again, very good discussion regarding bracing.

Thanks
Michael

Pooka1
07-21-2010, 08:49 AM
In this study, 50 progressed and 50 were stable.

Wouldn't it potentially be the hot ticket if someone determined a Scoliscore for all these patients?

Ballet Mom
07-21-2010, 12:47 PM
skevimc-

I don't think anyone on this site or involved with scoliosis "likes" bracing as an option. In fact, I can't think of a medical procedure or medical device that I like. Unfortunately, people have yucky medical procedures and medical devices used all the time. Fortunately, bracing is not permanent.

The Braist study is trying to prove that bracing doesn't work, so that bracing can no longer be shown as the standard of care in scoliosis treatment. Therefore, insurance companies won't have to pay for braces anymore and the medical profession will just let scoliosis curves continue to increase in size and stop naturally and rely on most curves not reaching surgical level...but at an increased deformity and more likelihood of progressing as an adult.

A great cost savings for the medical insurance industry.

The great thing about this study by Texas Scottish Rite is that it shows that bracing is effective. It will be much more difficult for insurance companies to abandon the practice of paying for scoliosis bracing, if not impossible.

There is no one that is forcing anyone to brace their child. But there are those who would like to force one treatment on everyone elses children.

Pooka1
07-21-2010, 01:08 PM
The Braist study is trying to prove that bracing doesn't work, so that bracing can no longer be shown as the standard of care in scoliosis treatment.

FALSE. And scandalous.

Pooka1
07-21-2010, 01:10 PM
The purpose of this study is to compare the risk of curve progression in adolescents with AIS who wear a brace versus those who do not and to determine whether there are reliable factors that can predict the usefulness of bracing for a particular individual with AIS.

http://clinicaltrials.gov/ct2/show/NCT00448448

Pooka1
07-21-2010, 01:13 PM
You crack me up, Sharon. I'll go out on a limb and say the number is somewhat higher than two or three - LOL!

It gets worse... I refer to these two-three people as my imaginary buddies. :eek::D

Ballet Mom
07-21-2010, 01:15 PM
FALSE. And scandalous.

There are people who disagree with you.

skevimc
07-21-2010, 01:17 PM
Edited to add. It alerts the two or three people who read my posts that I made a change. :)


Got it. Thanks. :)




It's a prospective controlled bracing studying with about 20 medical centers participating. That's 20 medical centers who agree it is ethical to randomize kids to a control group.


Man, this is huge. I see that the end is August 2010. I'd imagine it will take a year or two for any publications but I bet the conferences will start lighting up with results.



What I'm asking is the following:

1. Did they miss the growth spurt for a majority of the study subjects (determined any way you like)?

2. Is skeletal maturity typically achieved soon after the end of the growth spurt?


1. According to the commentary they did. I'm sure the text discusses it as well. But all patients were still skeletally immature.

2. I'm not sure what the time difference is between the cessation of vertical growth and full skeletal maturity.

I think the overall point is that 60% of patients were on the down slope of their height velocity. So they still had growth (because <1cm of growth in 6 months was an endpoint), but they weren't in their major growth spurt which is usually 6-13 cm/yr.



What I don't understand is why this study was so loaded with double majors when they are not the most prevalent curve type which thoracic, both in general prevalence and surgical prevalence.

These can't be consecutive cases... they must have selected in a way that over-represented double majors w.r.t. their prevalence in the general population and in the surgical population. Now if double majors have a higher risk then that would make the study stronger given they have so many double majors. But then they have to assume the brace works with the same efficient on double majors and T curves. They would have to show that at some point... maybe they did. Did they show any data where curve type is broken out?


The Lonstein paper has double majors progressing at the same rate as single T. And I just found the other study. You actually posted it (Soucacos et al 1998) A 5-year prospective study of 85,622 kids found 1,436 kids with scoliosis.. The incidence of progression for double curves is the same as single T curves as well. Both around 23%

I'm assuming they were consecutive "intent-to-treat" patients that met all of the criteria. If T curves were filtered out it would have been because of any number of exclusion criteria. Mainly, undiagnosed AIS and previous orthotic use.

I could not find if they broke the curve types down based on progression or surgery. This would be very interesting to see.



I may toddle over to a medical library and try to get the paper.

Probably a good idea. Reading the article definitely helps with interpretation. :)

Pooka1
07-21-2010, 01:19 PM
There are people who disagree with you.

There are people who insist they were abducted by aliens also.

hdugger
07-21-2010, 01:21 PM
The Braist study is trying to prove that bracing doesn't work, so that bracing can no longer be shown as the standard of care in scoliosis treatment. Therefore, insurance companies won't have to pay for braces anymore and the medical profession will just let scoliosis curves continue to increase in size and stop naturally and rely on most curves not reaching surgical level...but at an increased deformity and more likelihood of progressing as an adult.

I haven't loved that study (I complained in the past that they seemed to be monkeying with some of the requirements), but I have to defend my fellow MPh's and state that they're not *trying* to change the standard of care. They're trying to figure out if the standard of care is effective. That's always a reasonable thing to do, and this kind of research has been tremendously helpful in showing, for example, that physical therapy is just as good as surgery for most common back problems.

BTW, I'm not actually entirely in favor of bracing, personally. But I'd never recommend that someone else's child not be braced if that's what their doctor recommends. If people want to make their own counter-doctor decisions for their own child - well, that's what being a parent is all about. But recommending that *other* children ignore doctor's advice is out of our realm of expertise.

ADDED: "It's (BRAIST) a prospective controlled bracing studying with about 20 medical centers participating. That's 20 medical centers who agree it is ethical to randomize kids to a control group." I don't believe the study is randomized now. I think they changed their protocol part of the way through, and they're still calling it randomized, but it's not really.

Ballet Mom
07-21-2010, 01:50 PM
I haven't loved that study (I complained in the past that they seemed to be monkeying with some of the requirements), but I have to defend my fellow MPh's and state that they're not *trying* to change the standard of care. They're trying to figure out if the standard of care is effective. That's always a reasonable thing to do, and this kind of research has been tremendously helpful in showing, for example, that physical therapy is just as good as surgery for most common back problems.

BTW, I'm not actually entirely in favor of bracing, personally. But I'd never recommend that someone else's child not be braced if that's what their doctor recommends. If people want to make their own counter-doctor decisions for their own child - well, that's what being a parent is all about. But recommending that *other* children ignore doctor's advice is out of our realm of expertise.

I'll give them the benefit of the doubt...and if they ever manage to get enough people to participate, they may surprise themselves to discover that bracing works...obviously not for everybody.

The incessant anti-bracing, pro-surgery cheering squad on this site has obviously influenced my opinion of the study. And others have stated that the study has been designed to disprove bracing effectiveness, so it will be interesting to take apart their study when they're done. It better be unimpeachable.

And there certainly are people who want to restrict other people's decisions about scoliosis treatment to certain surgical procedures. Just like they want to shut down the research section and "control" the proper information flow.

And really, I don't care that all of you don't like bracing. No one forced your kids to brace, and none of you braced. I don't "like" bracing either...just as I wouldn't "like" to have a colostomy bag or a wheelchair, but the bracing has been successful. And I'm glad I made that decision and wouldn't have made any other. And I question why bracers are always being challenged on their decisions, like we love to torture our kids and the challengers don't. :mad:

hdugger
07-21-2010, 01:58 PM
And really, I don't care that all of you don't like bracing. No one forced your kids to brace, and none of you braced. I don't "like" bracing either...just as I wouldn't "like" to have a colostomy bag or a wheelchair, but the bracing has been successful. And I'm glad I made that decision and wouldn't have made any other. And I question why bracers are always being challenged on their decisions, like we love to torture our kids and the challengers don't. :mad:

My reasons for being suspicious of it are entirely unsupported :) - because I think the muscles play a large role, I'd be hesitant about doing anything that would weaken them. But, that's purely conjecture (the exercise experts don't even agree with it), and I suspect that if any surgeon had actually strongly recommended (or recommended at all) that my son brace, we would have done it. I just would have gone into it with mixed feelings.

But, you did something that was difficult, and your daughter has avoided surgery. Even if there's no way to prove that those two things are cause and effect, you have every reason to be proud of how you protected your child.

Ballet Mom
07-21-2010, 02:05 PM
My reasons for being suspicious of it are entirely unsupported :) - because I think the muscles play a large role, I'd be hesitant about doing anything that would weaken them. But, that's purely conjecture (the exercise experts don't even agree with it), and I suspect that if any surgeon had actually strongly recommended (or recommended at all) that my son brace, we would have done it. I just would have gone into it with mixed feelings.

But, you did something that was difficult, and your daughter has avoided surgery. Even if there's no way to prove that those two things are cause and effect, you have every reason to be proud of how you protected your child.

Thank you for the kind words of support. There is very little support on this site for people who are bracing their children, unfortunately.

Ballet Mom
07-21-2010, 02:15 PM
Oh, and with my daughter diagnosed with a 35 degree quickly progressing curve at age 12, Risser 0, one year pre-menarchal, and four or five inches of follow-on growth I think I can pretty safely say the brace stopped her curve.

With absolute 100% certainty that would satisfy Pooka? No, but with what most doctors and researchers would realize probably had close to zero chance of stopping its progression on its own.

Sherie
07-21-2010, 02:18 PM
I'll give them the benefit of the doubt...and if they ever manage to get enough people to participate, they may surprise themselves to discover that bracing works...obviously not for everybody.

The incessant anti-bracing, pro-surgery cheering squad on this site has obviously influenced my opinion of the study. And others have stated that the study has been designed to disprove bracing effectiveness, so it will be interesting to take apart their study when they're done. It better be unimpeachable.

And there certainly are people who want to restrict other people's decisions about scoliosis treatment to certain surgical procedures. Just like they want to shut down the research section and "control" the proper information flow.

And really, I don't care that all of you don't like bracing. No one forced your kids to brace, and none of you braced. I don't "like" bracing either...just as I wouldn't "like" to have a colostomy bag or a wheelchair, but the bracing has been successful. And I'm glad I made that decision and wouldn't have made any other. And I question why bracers are always being challenged on their decisions, like we love to torture our kids and the challengers don't. :mad:

Agree with you 100%. Speaking from experience, I believe strongly that parents need to have options. How many are going to be satisfied just sitting by waiting to see if they're kid progresses to surgery? At the very least, you can say you tried and it failed, better than not trying at all. I took my daughter into surgery knowing that I did the best I could, no regrets. And my daughter knows that too.

Good luck to your daughter for continued success.

skevimc
07-21-2010, 02:43 PM
And really, I don't care that all of you don't like bracing. No one forced your kids to brace, and none of you braced. I don't "like" bracing either...just as I wouldn't "like" to have a colostomy bag or a wheelchair, but the bracing has been successful. And I'm glad I made that decision and wouldn't have made any other. And I question why bracers are always being challenged on their decisions, like we love to torture our kids and the challengers don't. :mad:

Just to clarify my own point and reason for saying I don't like bracing. I was primarily saying it to show my impartiality to the presented study. I come from the exercise side of the argument and for decades bracing studies would start their articles with "It has been shown that exercise does not affect the natural history of the curve". And while that's technically true, the studies they quote were horrible studies yet this influenced clinical dogma. So a chunk of my grad school time was spent looking at bracing studies and looking at the claim of how effective bracing really is. We never genuinely doubted that bracing was effective, but it certainly wasn't the open and shut case that was presented. As well, we were trying to design a better, more acceptable alternative to bracing, i.e. strength training.

So all of that to say that I think the TSRH study shows fairly clearly the effectiveness of bracing.



Oh, and with my daughter diagnosed with a 35 degree quickly progressing curve at age 12, Risser 0, one year pre-menarchal, and four or five inches of follow-on growth I think I can pretty safely say the brace stopped her curve.


I would agree completely.

Pooka1
07-21-2010, 04:21 PM
http://www.orthosupersite.com/view.aspx?rid=65842

PNUTTRO
07-22-2010, 09:05 AM
I think the overall point is that 60% of patients were on the down slope of their height velocity. So they still had growth (because <1cm of growth in 6 months was an endpoint), but they weren't in their major growth spurt which is usually 6-13 cm/yr.

I think that this is the real problem. A patient isn't a patient until there are symptoms. And likely a lot of kids have had their major growth spurt before the scoliosis is diagnosed. It probably takes a parent who really notices their kid's body changes to detect it early.

Pooka1
07-22-2010, 09:16 AM
I think that this is the real problem. A patient isn't a patient until there are symptoms. And likely a lot of kids have had their major growth spurt before the scoliosis is diagnosed. It probably takes a parent who really notices their kid's body changes to detect it early.

Yes.

That one commentator thought measurement error was a potential Achilles heel.

I think another is that these results may largely of not only apply to kids with double majors who are beyond their growth spurt and wearing Boston braces. And even then there is a small effect buried under a sea of variability. I would like to see if and how surgeons will change their treatment based on this paper.

I also wonder if these results have much if any applicability to lumbar curves. I think because of the lower propensity to progress, there the risk of over-treating is larger than in double majors and I don't know if this study was designed to ferret out how many patients would not have progressed anyway no matter what they did or didn't do.

And the $64,000 question of what happens in the out years (35 is a key age per Linda) still looms. I hope someone follows this cohort out.

Last, we have seen victory claimed before only to be shot down as in the case inadvertent stacking of curve types in other studies. Nobody saw that coming and perhaps nobody will see other things coming that affect interpretation of these results. Scientific results like these are tentative by their nature, especially when the results are not clean. These results may stand but we will have to wait and see if they do and if there is enough here to change treatment regimes.

bas2101
07-22-2010, 04:33 PM
"And it is unfortunate, there are many young children who are at great risk of curve progression, who are following the advice of their doctor or some other scoliosis practitoner, who will never know of any other treatment, because his/her doctor does not believe in it, or is not familiar with it. "

Michael,

This is what is so frustrating. I read your post, and can't help thinking "what if," even though it is futile now years later. Like your daughter, at 8 years old my daughter was at 40 degrees. At that time, we saw 3 pediatric orthopedists specializing in scoliosis. We were told by one doctor to get growing rods that would need adjustment (something like every 6 months if I remember correctly), and that she would most likely need surgery in the end anyway. The other two doctors said to brace, that she would have to wear the brace for about 8-10 years during which time she would NOT get a reduction and may still need surgery in the end anyway. With this kind of prognosis, we said forget it to both options. These were the only two options we were ever told of by the surgeons. At the time, we figured if she is very likely to have surgery in the end anyway (we were told she had a 90% chance of progression), let's at least try other options, many of which were also futile. But, what I have learned from other JIS parents over the years, some of these kids are having amazing results with reduction from bracing, oftentimes in combination with PT, like your daughter. You just never know, and can't wait around for studies to "prove" everything. Since my daughter's 68 degree curve (at 12 1/2 years old) reduced to 60 degrees (by 14 years old) with bracing and PT, I only imagine she would have had much more success if she had started this back when she was 8 when she was more flexible and had a lower curve, if only we knew more and weren't given such a bleak prognosis based on I am not sure what. I hope your daughter has continued success.

Ballet Mom,

My daughter also reduced her curve through bracing/PT (albeit very late in the game and certainly not ideal), 68 to 60. She was pre-menarche, Riser 0, and has now grown 5 1/4 inches. Without the bracing she would absolutely have continued progressing with all of that growth. Obviously I do not know what the future holds, but it is an example of reduction while bracing, something too many doctors claim won't happen. I hope this will change in the future, especially for the JIS kids, some of whom seem to grow out of their curves while braced.

:) Brooke

Ballet Mom
07-22-2010, 06:02 PM
I think that this is the real problem. A patient isn't a patient until there are symptoms. And likely a lot of kids have had their major growth spurt before the scoliosis is diagnosed. It probably takes a parent who really notices their kid's body changes to detect it early.


Especially since the majority of curves in this study are double majors. They are apparently the most likely to not be noticed until they're big because they are typically well-balanced and less likely to show.