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concerned dad
03-01-2009, 12:32 PM
The million dollar question: "Does Bracing Work?".

I submit the clear answer is YES

Now, I know that this is something that we've discussed on other threads here. I've been wrestling with this concept for a while.

Here is the caveat: It all depends what is meant by the word "work".

Dr. Dolan and the BrAIST team in Iowa have made a compeling case that we dont know if bracing works to reduce the incidence of surgery.

What they have not done (or attempted to do) is to show that we dont know if bracing works to alter the natural history of AIS. That's because we do know that it indeed alters the natural history.

A very knowlegable poster on this forum often says
Surgery is the only proven option to reduce and stabilize curves permanently.

That assertion has always bothered me. The whole "permanent" thing bothers me because the "surgical Revision" thread on this forum is so large. What also bothers me is the "end point" used in the statement: "reduce and stabilize".

The very recent Danielson paper that looked at the Swedish patients involved with the 1995 SRS bracing study makes the following conclusion:

We therefore think that the basic findings, that well-performed brace treatment can stop curve progression and that observation will allow some curves to progress until treatment is needed, are still valid.

There are loads of other papers that show bracing alters the natural history. The BrAIST study is designed to see if it alters the ultimate need for surgery.

Surgery, that is what Dr Dolan says we should worry about. I dont know, it seems we should worry about both curve stabilization (and reduction for the case of the SpineCor) and surgery.

Now, we can argue the difference between "thinking" something and "knowing" something. We can discuss the merits of the papers. We can discuss the ethics of the research. But, it seems pretty clear that bracing does indeed work so far as stabilizing curves when compared to observation. If Dr. Dolan had done her systematic review using that criteria the results would have been dramatic.

Just my opinion and subject to change.

Pooka1
03-01-2009, 03:26 PM
What they have not done (or attempted to do) is to show that we dont know if bracing works to alter the natural history of AIS. That's because we do know that it indeed alters the natural history.

News to me. How do we know this?


That assertion has always bothered me. The whole "permanent" thing bothers me because the "surgical Revision" thread on this forum is so large.

We have to be very careful here. The revisions, to my knowledge are for very old style instrumentation that caused OTHER, NEW problems or for pseudoarthroses. Also, some fusions were not internaly held.

The new instrumentation, absent pseudoarthroses, is a new ballgame. The old revisons stats do not apply. They are claiming cures with the new hardware. No brace or PT program or prayer ever produced a cure like modern fusion surgery.

Now I don't know if they were claiming cures with the old style instrumentation and how exactly they can now claim cures with the new instrumentation. I'm just saying they do.

titaniumed
03-01-2009, 03:30 PM
Does bracing work?

Bracing is a tool. It is a temporary tool that is certainly worth a try, to help control scoliotic curves and "buy time". In the beginning it is the most logical decision.

With the extreme un-balanced forces that we have in our backs, it is a blessing that it can even hold a spine at its current state.

Dental bracing works well, but once the teeth are straightened, there are no forces to knock them back out of alignment, unless you work for the circus and pull trains with your teeth. Now if we all had dental braces and pulled trains with our teeth, then there would be all sorts of studies, to see if dental bracing is successful or not.

" I pulled 5 cars 100 feet and my teeth are straighter?' "Wow, who is your dentist and what braces did he use?"

After becoming an adult, after being weaned from the brace, what would happen if one pulled trains without braces? "severe malocclusion?"

Unless one is prepared to wear a brace 30 hours per day for the rest of their life, and drive themselves absolutely bonkers doing just that, well then we all know what the next step is.

Surgery is the best answer that we have today. Yes, its a difficult decision, and we have made great leaps in improvement through the years. The fact that some of us have to have revision surgeries down the line should not be a stop sign. Surgeons and insurance companies address this daily and strive to improve the initial procedure.

These are more important questions.

How many brace wearers didn't need surgery?.............................
How will bracing affect the quality of my life? ................................
How will surgery affect the quality of my life?...............................
How long should I brace?.....................................
When should I have my surgery?...................................

All are very difficult questions with different answers for everyone and with the common denominator "quality of life"

Ed

cactigirl96
03-01-2009, 04:04 PM
Dear concerned dad,

bracing does work. i wore a brace for over 2 years. before my treatment, my curvatures were 37 degrees. today (still in a brace) they are 25 degrees. if you have any questions, please feel free to post one on my page.

-Hannah
AKA: cactigirl96

leahdragonfly
03-01-2009, 07:14 PM
Quote: "What they have not done (or attempted to do) is to show that we dont know if bracing works to alter the natural history of AIS. That's because we do know that it indeed alters the natural history."


Hi Concerned Dad,

I can't speak for you, and everyone is entitled to their own opinion. But in my mind, I do not believe that we know whether or not bracing alters the natural history of AIS. Yes, there have been many studies both pro and con, but they are very flawed. I don't know how anyone can "know" with conviction and scientific backing that bracing alters the natural history if AIS because we don't have valid studies that are randomized and have a comparable control group.

And as an adult who was braced very unhappily for two years as a young teenager, it bothers me immensely (and should bother at least some others) that there may be inummerable kids out there who are being subjected to brace wear that might be unnecessary because their curve will not progress anyway, or will progress to surgery no matter what.

Concerned Dad, I think you are lucky in a sense because your daughter should be beyond bracing age in the near future (if not already, it sounds like). Those of us whose kids are really young have many more years and greater risk of curve progression to factor into an already difficult decision.

This is definitely an interesting topic.

Regards,

txmarinemom
03-01-2009, 07:52 PM
... bracing does work. i wore a brace for over 2 years. before my treatment, my curvatures were 37 degrees. today (still in a brace) they are 25 degrees.

Hannah, honey, you are 13 (at my best guess), and you're still in a brace. This isn't the type of information being discussed. I hope bracing works for you: It doesn't for everyone.


What they have not done (or attempted to do) is to show that we dont know if bracing works to alter the natural history of AIS. That's because we do know that it indeed alters the natural history.

I'm with Sharon on this. "We" know this how??

"We" don't know anything other than some curves progress despite bracing, and some curves don't without bracing. The variables are far too numerous to assert any "natural history" has been - or is - altered.


A very knowlegable poster on this forum often says
Surgery is the only proven option to reduce and stabilize curves permanently.

And she's right. Fusion (outside of pseudoarthrosis or hardware failure) DOES stabilize curves. To say bracing has that consistent effect is ridiculous. One need only look at all the formerly braced surgical patients roaming around here to see the folly of that assertion.


The whole "permanent" thing bothers me because the "surgical Revision" thread on this forum is so large. What also bothers me is the "end point" used in the statement: "reduce and stabilize".

Look at the types of hardware most revision patients have, CD. Harrington rod technology is by far the majority of that group, and some in the revision section didn't even HAVE hardware.

What bothers you about that end point, exactly? It's valid.


... it seems pretty clear that bracing does indeed work so far as stabilizing curves when compared to observation.

Without knowing which patients would have progressed with or without a brace (and it varies from patient to patient), you have no solid data upon which to base that conclusion. If you can prove it (after such a short time in this world), you need to publish it and straighten out all the people who've been researching it for years (pity the answer was right under their noses all the time ;-).

I'm not sure why you pulled up an SRS statement from 1995. 13 year old data is so ... well ... 13 years old. Do you not realize how much prevailing opinion has changed in that time?

You're apparently very hung up on the BrAIST study. While it MIGHT prove useful, it's not YET (and may never be). Personally, I'll be skeptical even when I see the data because, *again*, curves can't be compared apples to oranges. My surgeon is actually the contact for BrAIST (at Shriners Houston) ... so I will be following it.

You seem to be missing the part in the BrAIST goals that states:

"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.

Until you - or anyone - can explain why one person's 40° curve shoots to 65° between the ages of 30-40 (while mine sat static at a point where it *should* have progressed a degree a year - and we were both braced, but I was NON-compliant), I'm not buying your point of view.

I'm not sure what you're getting at with "Here is the caveat: It all depends what is meant by the word "work". "

"WORK" would be defined by stabilizing a curve so it doesn't progress later, and/or avoiding pain. How many definitions do you think "work" has in this scenario? That's about the ONLY simple part.

I realize you really WANT bracing to be effective, but you're pounding a square peg in a round hole.

Regards,
Pam

concerned dad
03-02-2009, 10:52 AM
I'm not sure why you pulled up an SRS statement from 1995. 13 year old data is so ... well ... 13 years old. Do you not realize how much prevailing opinion has changed in that time?



I dont have much time today to reply, but I wanted to clarify a point I should have been clearer on.
The quote from the paper bears repeating.
We therefore think that the basic findings, that well-performed brace treatment can stop curve progression and that observation will allow some curves to progress until treatment is needed, are still valid.

That appeared not 13 years ago, but less than 2 years ago in the Journal Spine.

It is so recent that Dr Dolans systematic review of the literature which was used (in part) for justification of the BrAIST study did not include the results.

Perhaps the point of my post is that Dr Dolan defines "work" in my original question as "preventing surgery". So the question, "does bracing work to prevent surgery" has an answer of "we dont know".
But, the question, "Does bracing work to alter the natural history of scoliosis", well, I believe the data shows that the answer is yes. Clearly not for everyone, but statistically it has an effect.

When a doctor says to you "We dont know if bracing works". You really should push them to define what they mean by "works".

So, by some peoples definition of "works", the following statement
well-performed brace treatment can stop curve progression
means that we dont know if bracing "works" because stopping curve progression is not the same as avoiding surgery. And this warrants some explanation because intuitively it sounds strange. No time right now though.....

concerned dad
03-02-2009, 01:06 PM
And, as Pam noted above, prevailing opinion has changed over the last few years.
I think that what has changed is the definition of the word "work" (as used in the context of this thread title).

What happens if you do a systematic review like Dr. Dolan did but, instead of considering surgery, you consider curve progression/stabilization?
You get a result like this:

A Meta-Analysis of the Efficacy of Non-Operative Treatments for Idiopathic Scoliosis in The Journal of Bone and Joint Surgery 79:664-74 (1997)

With use of data culled from twenty studies, members of the Prevalence and Natural History Committee of the Scoliosis Research Society conducted a meta-analysis of 1910 patients who had been managed with bracing (1459 patients), lateral electrical surface stimulation (322 patients), or observation (129 patients) because of idiopathic scoliosis. <snip details> The weighted mean proportion of success was 0.39 for lateral electrical surface stimulation, 0.49 for observation only, 0.60 for bracing for eight hours per day, 0.62 for bracing for sixteen hours per day, and 0.93 for bracing for twenty-three hours per day. The twenty-three-hour regimens were significantly more successful than any other treatment (p < 0.0001). The difference between the eight and sixteen-hour regimens was not significant, with the numbers available. Although lateral electrical surface stimulation was associated with a lower weighted mean proportion of success than observation only, the difference was not significant, with the numbers available. This meta-analysis demonstrates the effectiveness of bracing for the treatment of idiopathic scoliosis.

As Leah and others note, bracing can be very difficult to endure. Perhaps looking at surgery rates is totally valid if the treatment is so hard to tolerate. Especially true if surgical advancements have been significant. But, if the treatment is not that hard to tolerate (read: SpineCor) perhaps we (or some of us) should at least realize that the thing that changed with bracing studies over the last few years is the outcome measurement - "Work".

Pooka1
03-02-2009, 01:11 PM
I dont have much time today to reply, but I wanted to clarify a point I should have been clearer on.
The quote from the paper bears repeating.
We therefore think that the basic findings, that well-performed brace treatment can stop curve progression and that observation will allow some curves to progress until treatment is needed, are still valid.

CD, that is a faith statement, not one based on evidence. Moreoever, these researchers will not deny that. What you won't see is anyone claiming they showed this based on evidence. It sounds more like it is their sense of the (flawed) data in hand which is fine. They "think" it but they damn well don't "know" it.


Perhaps the point of my post is that Dr Dolan defines "work" in my original question as "preventing surgery". So the question, "does bracing work to prevent surgery" has an answer of "we dont know".
But, the question, "Does bracing work to alter the natural history of scoliosis", well, I believe the data shows that the answer is yes. Clearly not for everyone, but statistically it has an effect.

Beyond holding a curve not only below surgery territory but also below the point where virtually all curves of that magnitude will likely progress to surgery in one's lifetime, I don't see another definition for "work."

To date, only fusion surgery has been shown to have a chance of "working." Other treatment modalities might work but the world is still waiting on the evidence. They might work but we don't know. It has to be shown, especially with something as odious as bracing.


When a doctor says to you "We dont know if bracing works". You really should push them to define what they mean by "works".

If a surgeon or anyone has a different definition than the one I typed above, I'd like to see them defend it.


So, by some peoples definition of "works", the following statement
well-performed brace treatment can stop curve progression
means that we dont know if bracing "works" because stopping curve progression is not the same as avoiding surgery. And this warrants some explanation because intuitively it sounds strange. No time right now though.....

Here's how I look at it...

success = halting a curve below the point where surgery is needed now or likely to be needed in the lifetime of a patient.

If someone can defend a radically different definition, I'd like to read it.

Pooka1
03-02-2009, 02:03 PM
CD,

A meta-analysis of flawed, uncontrolled studies data canNOT be counted on to yield unflawed results/conclusions.

And until they address themselves to stabilizing/reducing a curve not only below surgery territory but below the territory where most curves will progress to surgery in one's lifetime or produce too much pain, they are spinning their wheels.

Just asking a general question if bracing slows or halts curves where that question isn't tethered to the magic angles that are known to need surgery now or to progress is not really striking at the heart of the problem, is it?

concerned dad
03-02-2009, 03:01 PM
success = halting a curve below the point where surgery is needed now or likely to be needed in the lifetime of a patient.

If someone can defend a radically different definition, I'd like to read it.

How about this

success = preventing a curve from advancing 6 degrees.

That is what Nachemson used. Radically different in its implications.

concerned dad
03-02-2009, 03:04 PM
CD,

A meta-analysis of flawed, uncontrolled studies data canNOT be counted on to yield unflawed results/conclusions.



Isnt this exactly what Dr Dolan did in her meta-analysis paper. Same methodology. Only difference was the definition of the outcome.

concerned dad
03-02-2009, 03:30 PM
Originally Posted by concerned dad
What they have not done (or attempted to do) is to show that we dont know if bracing works to alter the natural history of AIS. That's because we do know that it indeed alters the natural history.



News to me. How do we know this?



How about the attached figure from the 2007 Danielson Spine Paper.
Note that here we are looking at bracing "altering" the natural history without looking at incidence of surgery.

debbei
03-02-2009, 03:57 PM
I can only speak for myself. When my scoliosis was diagnosed, my curves were approximately 40 & 35. They were brought down to both in the 20-ish degrees while in the brace, and after about 3 years out of the brace, at 22, my curves were both about 35. Fast forward 25+ years, and BIG surprise to me, both curves were 66 degrees. At the time I was released from my orthopedic doctor at 22, I was a 'success.' If I never had the brace at all, I am sure that both curves would have ended up at 66 as they did in the end; however, would it have been earlier in my life? I don't know, and I don't think anyone can answer that for sure.

I think in my case, the bracing didn't work in the long run. However, maybe it postponed the inevitable surgery until a time when technology was better than it was back in the mid-70's when I was diagnosed.

Just my opinion.

txmarinemom
03-02-2009, 07:23 PM
How about this

success = preventing a curve from advancing 6 degrees.

That is what Nachemson used. Radically different in its implications.

CD, as I said before, there are too many adults here that were braced kids, with stable (it seemed) curves, that later needed surgery because it progressed in adulthood to count.

At what age do you define bracing "worked"? 20? 40? 60?

There are people in ALL those groups here who were braced as children. Some steadily progressed, some took huge jumps (presumably from progesterone) during pregnancy, and some just went to doctor for something unrelated and had to go "Sh**. What curve? They FIXED that thing!"

And I'm not anywhere *near* buying Nachemson's definition of "work" as progression of < 6°: Starting where? At the point they'll brace? If you start with a kid at 25° and they end up at skeletal maturity at 32° what do you (not YOU ... the collective you) have to be smoking to deem it a failure?

Also, by the "avoiding surgery" definition, my brace may have played ~some~ part in keeping mine under 50° (I'd say it had little effect on stability). Does that mean bracing "worked" for me even though I ended up choosing surgery later for pain (and, no ... not to *cause* it, to remedy it ;-).

I'm still very skeptical of the accuracy of ANY study on bracing when the scenarios can be - and often are - so radically different. Personally? I'm not a big proponent of bracing; probably because I wore one - and never had back pain at all *until* I was put in one.

But on the other hand, the magic number for surgery is ±50° ... and that's the SAME point curves can *typically* be expected to progress a degree a year.

... which brings me back around to the question ...

If you keep a kid with AIS under 50° at end of bracing, and they creep up to 65° at age 40 (and need surgery), what do you have? A treatment that "worked" or failed?

The data doesn't mean squat when you have a fairly sizable group who, like Debbe, weren't NEAR 50° when released from bracing, but progressed anyway. The studies say *I* should have progressed and she shouldn't have. As long as there are cases like us, I will always believe the research is inherently flawed.

Pam

debbei
03-02-2009, 07:36 PM
The data doesn't mean squat when you have a fairly sizable group who, like Debbe, weren't NEAR 50° when released from bracing, but progressed anyway. The studies say *I* should have progressed and she shouldn't have. As long as there are cases like us, I will always believe the research is inherently flawed.

Pam

Unfortunately there are no guarantees with this. When I brought my 9 year old daughter to the orthopedic dr. for her slight scoliosis last summer, he told me (referring to my history) that curves ending up in the mid 30 degrees are iffy. Some progress.....others do not. It's kind of a grey area. I guess this is where the genetic test will come in handy. When I bring my daughter back to be rechecked later this month, I will ask (and insist) that she have the genetic test. I don't care what I have to pay for it.

txmarinemom
03-02-2009, 07:52 PM
Unfortunately there are no guarantees with this. When I brought my 9 year old daughter to the orthopedic dr. for her slight scoliosis last summer, he told me (referring to my history) that curves ending up in the mid 30 degrees are iffy. Some progress.....others do not. It's kind of a grey area.

Exactly my point. There are SO many layers of complexity (and variability) to this, I simply can't see how a bracing study would ever be effective.

Your daughter may very well be predisposed to progress (I hope not), but another point I'm trying to make is I really think we're ALL predisposed one way or another.

Yes, it looks like bracing MAY be more effective in SOME cases of early JIS ... but I haven't seen the long term outcomes of THAT either. It's pure conjecture at this point to say correction in a 7 year old will hold water in 20 years for the adult that child becomes.

As far as my case, I don't know of anyone else here who KNOWS for certain their curve didn't progress at the size mine was (maybe there are and they don't post). How would a study be able to separate a curve of my nature of from everyone else's typical curve? It didn't LOOK any different when I was diagnosed with AIS (since deemed JIS) and braced ...

Pam

nate03
03-02-2009, 08:02 PM
When I bring my daughter back to be rechecked later this month, I will ask (and insist) that she have the genetic test. I don't care what I have to pay for it.

Hi,
Just thought I would pass along the info I have learned regarding the genetic test, Axial Scoli Score.

Only girls diagnosed with a curve of 10 -25 degrees, between the ages of 9 - 13 are eligible. The test is only being offered at certain hospitals - not sure of any other than Philadelphia Shriner's Hospital. Shriners Hospitals provide free care - so there would be no charge if you could do it through a Shriner's Hospital near you. It is a spit test - no blood work. The results are given with a score between 1 - 200,

The higher the number you get between 1-200, the more likely it is that the scoliosis will progress.

1-40 - low risk or chance of curve progression
41-180 - moderate risk of curve progression - higher number/higher risk
181-200 - high risk/aggressive curve progression

I am currently researching this test for my daughter with a very mild curve because of her brother's scoliosis. She is age 11, curve 11 degrees so she just qualifies.

-Cara

debbei
03-02-2009, 09:54 PM
Hi,
Just thought I would pass along the info I have learned regarding the genetic test, Axial Scoli Score.

Only girls diagnosed with a curve of 10 -25 degrees, between the ages of 9 - 13 are eligible. The test is only being offered at certain hospitals - not sure of any other than Philadelphia Shriner's Hospital. Shriners Hospitals provide free care - so there would be no charge if you could do it through a Shriner's Hospital near you. It is a spit test - no blood work. The results are given with a score between 1 - 200,

The higher the number you get between 1-200, the more likely it is that the scoliosis will progress.

1-40 - low risk or chance of curve progression
41-180 - moderate risk of curve progression - higher number/higher risk
181-200 - high risk/aggressive curve progression

I am currently researching this test for my daughter with a very mild curve because of her brother's scoliosis. She is age 11, curve 11 degrees so she just qualifies.

-Cara

Cara,

Thanks for the info. We are close to philadelphia, so maybe I will go to Shriner's, depending on what her curve is. She will be 10 in June, and each of her 2 curves were 5 degrees each last summer. I'll see what the doc says next week. The pitty of this whole thing is that, she, her two brothers and I ALL participated in the study last summer, but you can't get your individual results. I really wish I could.

concerned dad
03-03-2009, 09:39 AM
Just another clarification to my original post above.
When I ask if Bracing works, I mean in an epidemiological sense. Not in an individual sense.




The data doesn't mean squat when you have a fairly sizable group who, like Debbe, weren't NEAR 50° when released from bracing, but progressed anyway. The studies say *I* should have progressed and she shouldn't have. As long as there are cases like us, I will always believe the research is inherently flawed.

Pam

It has been proven (or at least suggested) that baby aspirin can prevent a second heart attack. It doesn’t work for everyone, but statistically, on a large population, it has been shown to have an effect.

How large of an effect? I don’t know, but if all it takes is swallowing a small baby aspirin the added benefit is likely worth the trouble. It doesn’t guarantee you're not going to have a second heart attack though.

If I had a second heart attack even though I took a daily baby aspirin does that mean the research is "inherently flawed"?

I said above that I believe the data shows that bracing has an effect. How large an effect I don’t know. I agree that science has not been able to quantify the effect. But, I do believe that science has shown that there is an effect. Does it reduce the need for surgery? We dunno.

Regarding the 6 degree issue - let me ask you this: If you could (statistically) have a lower chance of your (or your child’s) scoliotic curve progressing from 20 degrees to 26 degrees by taking a baby aspirin. Would it be worthwhile to you? Or, would it only be worthwhile taking that baby aspirin if you knew that (again statistically) you had a better chance of avoiding surgery.

another point, a bit off topic.............

A very important result from Dr. Dolans systematic review paper is the data showing the incidence of surgery for braced patients. It is from a large sample and she says it is significant.

The fact that a large number (n = 1814) of braced patients from many different institutions were available for this review is evidence for the reliability of the pooled surgical rate of 22%.

If someone came up with a new brace (or even a baby aspirin) and showed that by using this treatment in the same population as Dolan used, the surgical rate dropped to 5%, would that mean the new treatment worked? Wouldnt that be an example of proving the efficacy of a new treatment in the absence of a random controlled trial?

Now the obvious question for anyone who has been following this and other discussions about bracing and the SpineCor is: What is the surgical rate for the SpineCor? From Dr. Coillard's 2007 paper, it is 22.9%.
Oh well.

But, what about the SpineCor's effect on the curve. What about the 6 degree metric? No time now to dig into it. But someone (Sharon?) if you could address my question two paragraphs up I would appreciate it.

2kids
03-03-2009, 01:38 PM
Hi,
Just thought I would pass along the info I have learned regarding the genetic test, Axial Scoli Score.

Only girls diagnosed with a curve of 10 -25 degrees, between the ages of 9 - 13 are eligible. The test is only being offered at certain hospitals - not sure of any other than Philadelphia Shriner's Hospital. Shriners Hospitals provide free care - so there would be no charge if you could do it through a Shriner's Hospital near you. It is a spit test - no blood work. The results are given with a score between 1 - 200,

The higher the number you get between 1-200, the more likely it is that the scoliosis will progress.

1-40 - low risk or chance of curve progression
41-180 - moderate risk of curve progression - higher number/higher risk
181-200 - high risk/aggressive curve progression

I am currently researching this test for my daughter with a very mild curve because of her brother's scoliosis. She is age 11, curve 11 degrees so she just qualifies.

-Cara

Cara,
Can anyone request to have this test if they fall into the age range? They are not doing this test in the Washington area, but our doctor did mention it last week. Perhaps it would be worthwhile to drive to Philadelphia. Please PM me any details you have to share.

Thanks!

Pooka1
03-03-2009, 02:07 PM
How about this

success = preventing a curve from advancing 6 degrees.

That is what Nachemson used. Radically different in its implications.

CD,

I think you are confusing what they can say is a change versus what change is significant.

The 6* change is simply the smallest change they can say occurred due to the measurement error. It is part of the "Methods" of the study.

Neither Nachemson nor anyone is claiming 6* all alone and by itself is significant to what really matters... avoiding surgery now and in the future. That would be in the "Conclusions" section.

Nachemson is NOT saying 6* is magical; He is just saying it happens to be the minimum increase they can measure (because the errror bars are +/- 5*). That is, if they measure an increase of at least 6*, they can say the curve increased. They are not ascribing a significance to "6*" beyond that being their precision.

Think of it as a "yes/no." If the curve measures at least 6* more than the previous measurement, then they say "yes" it increased. If it increased, they then can say how much it increased. After they determine that, they can then decide if that increase is significant in terms of avoiding surgery.

Pooka1
03-03-2009, 02:08 PM
Isnt this exactly what Dr Dolan did in her meta-analysis paper. Same methodology. Only difference was the definition of the outcome.

The patients are still stacked. Or at least they don't know with the averaged data if the patients are stacked.

GIGO.

Pooka1
03-03-2009, 02:14 PM
How about the attached figure from the 2007 Danielson Spine Paper.
Note that here we are looking at bracing "altering" the natural history without looking at incidence of surgery.


No. I could write a paragraph or two on that figure that disagrees with your conclusion.

The biggest issue is patient stacking and error bars. If you put error bars on those points I'm guessing the three curves are not different. Also look at the scale of the Y-axis and think about the measurement precision. Those are the same lines.

Last, connecting three points over that many years is questionable. I realize two points determine a line and there are three there but at some point, you have to take a breath and think about that.

Pooka1
03-03-2009, 02:26 PM
Regarding the 6 degree issue - let me ask you this: If you could (statistically) have a lower chance of your (or your child’s) scoliotic curve progressing from 20 degrees to 26 degrees by taking a baby aspirin. Would it be worthwhile to you? Or, would it only be worthwhile taking that baby aspirin if you knew that (again statistically) you had a better chance of avoiding surgery.

No the 6* is just the precision of the measurement. It doesn't have importance beyond that. This is simply the smallest increase they can confidently PHYSICALLY measure on a radiograph. It then has to be interpreted in the context of the study.


If someone came up with a new brace (or even a baby aspirin) and showed that by using this treatment in the same population as Dolan used, the surgical rate dropped to 5%, would that mean the new treatment worked? Wouldnt that be an example of proving the efficacy of a new treatment in the absence of a random controlled trial?

In my opinion, if they can eventually show that there is a 5% less chance of needing surgery with a brace, it wouldn't justify wearing one unless it dropped from 100% avoidance of surgery to 95% avoidance or dropped from 95% avoidane of surgery to 90%. But we know a priori that bracing is nowhere near that effective to start with.


But, what about the SpineCor's effect on the curve. What about the 6 degree metric? No time now to dig into it. But someone (Sharon?) if you could address my question two paragraphs up I would appreciate it.

Six degress is only the measurement precision, nothing more.

Pooka1
03-03-2009, 02:39 PM
How about the attached figure from the 2007 Danielson Spine Paper.
Note that here we are looking at bracing "altering" the natural history without looking at incidence of surgery.

By the way, even if the error bars didn't overlap (and they will if only from the measurement precision), you'll note that the observation only and the braced from the start group showed similarly trajectories (within measurement error). Only the observation then braced group had a significant increase in the 18 years and even then, it was small. This seems to be a different cohort from the other groups in terms of curve proression.

Also, we have to wonder about data selection (as always).

concerned dad
03-03-2009, 02:53 PM
Originally Posted by concerned dad => How about the attached figure from the 2007 Danielson Spine Paper.
Note that here we are looking at bracing "altering" the natural history without looking at incidence of surgery.
No. I could write a paragraph or two on that figure that disagrees with your conclusion.

The biggest issue is patient stacking and error bars. If you put error bars on those points I'm guessing the three curves are not different. Also look at the scale of the Y-axis and think about the measurement precision. Those are the same lines.

Last, connecting three points over that many years is questionable. I realize two points determine a line and there are three there but at some point, you have to take a breath and think about that.

Not sure that I agree with you on that.
The data points in the graph represent the mean of a group of measurements (each with a standard deviation of say 5 degrees).
The uncertainty of a single point would be 5 degrees and yes, if N=1 for each of the 3 lines there would be little/no significance.
But, since we are dealing with means, the uncertainty decreases as a function of N. (the square root of N actually).
So, instead of standard deviation, what should be plotted as error bars is standard deviation of the mean (also called Standard Error). As N gets larger, the Standard Error gets smaller, which means you have more confidence in your measurement.
So, for the Danielson curve, for the 40 patients who were treated with observation, the standard error of the points plotted on that line is 5/sqrt(40)=0.8 degrees (assuming the standard deviation of a single measurement is 5 degrees).

Could be wrong on this, I’m not a statistician, but I did sleep in a Holiday Inn Express last night.:D

Pooka1
03-03-2009, 08:52 PM
That figure has no business being published without error bars period.

Pooka1
03-03-2009, 09:52 PM
I am not a stats person but I have had occasion to deal with data of this type.

AIUI, you have to account for the error about each point and also the error of the mean.

Let's say you have three points, 5, 20, and 35 which averages to 20. Each has a precision of +/- five degrees.

Those errors bars about the average point are going to dwarf those for the average of 19, 20, and 21, again with the precision of +/- 5.

I don't do this type of research but I am guessing, betting, whatever, that the data that go into those average points is scattered like crazy and the error bars are HUGE when considering even just the standard deviation about the mean and not even considering the precision.

A stats person is invited to dope-slap me on this if this is incorrect.

macky
03-04-2009, 02:53 AM
Concerned dad look, I had my operation as you can see in 1966, 43 years ago,. You cannot state things as fact, until enough of a period of time has gone by then you can have a look and say well, that was the correct way. I had Harrington rods inserted and they were the first to be used in scoliosis operations and I was the 8th person I think or the seventh to be operated on in Australia. I have been FINE, I have also been able to have two great sons and have led a perfectly normal life, ok 12 years ago the pain started and it does get me down sometimes, but would I change things ABSOLUTELY NO WAY. In fact if I didnt have the operation I would be dead a long time ago.

I get so darn sick and tired of people on these forums confusing young people to the extent that they do not have any idea at all what is the right thing to do because of all the conflicting messages.

Pookah1 I so agree with you, so admire you, and so many others but please concerned dad there is proof from people on these forums that bracing does not work, it works while the brace is on but sure enough, a few years down the track, the curve starts to get worse and worse and all years of wearing the brace could have been spent enjoying life if they had opted for surgery, in the first place.

The modern surgery nowadays is so ,much better than in my day but hey I am still here, and lifes OK.
Give your son/daughter a break and go ahead and let whatever has got to be done, be done ,as they are the one that is going to go through all the maybes and ifs, and shall we's as far as bracing, schroth method, chiro, and so on and so on, just get it over with.
I am not being catty or nasty I have lived it, just remember that.
Macky

Pooka1
03-04-2009, 07:39 AM
Thanks macky.

I have come to understand that scoliosis is a particularly tough nut to crack. It certainly seems at this point that a good study is exceedingly hard to do. I have cut these researchers some slack on that lately. They still don't get a pass on obvious stuff but they get some latitude if they reel their conclusions in sufficiently.

In re Danielson, we have to ask... did they only start with these people in the graph or are those the only people they could track down? I suggest it is the latter which is raising data selection to a zen art.

Last, like a broken record, I am sitting here with IDENTICAL twins who have different scoliosises-es-es. :confused: Both right T curves but one curved very quickly and was highly rotated early while the other curved more slowly and has almost no rotation.

Until we get a handle on things like that, the ability to predict scoliosis trajectories is always going to be limited.

michele27
03-04-2009, 10:15 AM
I don't think concerned dad tries to confuse people at all. I really appreciate all the research he provides on these forums to help us make informed decisions. Everyone's experiences with scoliosis are different in one way or another. Anyone who braced effectively with no further progression would argue that bracing does work. While I wouldn't think surgery would be the end of the world for my daughter, I certainly would love to avoid it if possible, simply because of the risks that all surgeries carry. Bracing may or may not work for my child, but unless a doctor can flat out tell me that "yes, no matter how we treat your daughter, she will still need surgery", then I will at least give it a go. That's just me, though. To each his own. Anyway, concerned dad and pooka1...I find your posts and debates very informative, so please carry on!:)

PS
CD, I like the baby aspirin/heart attack analogy!

AILEA
03-04-2009, 02:03 PM
I only want to share with you my personal thoughts; I don’t think you can’t absolutely claim that brace doesn’t wok, and that curves will progress despite years of bracing, and this is what I understand reading some of the post here.
I agree, surgery is not the end of the world, but most of us are going to do everything we can to avoid it. One of those things is bracing, and bracing is not the end of the world.
My dd has been wearing a Cheneau for several years now, and it seems to be working, unless at the moment. I wish the results are for ever, but I know there it is the possibility of her curves progressing in the future.
So, regarding my daughter results I can’t not claim that bracing works (yet), but regarding people I know(a lot of people I have met in all this years) who wore braces when where young, yes, sometimes, bracing works, why not give bracing a chance?

Pooka1
03-04-2009, 02:25 PM
Nobody has claimed braces can't work. We just don't know if they can work.

The problem is that you can't know if the braces worked because some curves won't progress even doing nothing. If a person has that type of curve but happens to be wearing a brace, the brace is credited with stopping the curve. Potentially everyone who wears a brace whose curve stops would have seen their curve stop even if they didn't wear a brace.

That's why controlled studies are needed.

concerned dad
03-04-2009, 02:55 PM
I get so darn sick and tired of people on these forums confusing young people to the extent that they do not have any idea at all what is the right thing to do because of all the conflicting messages.

Pookah1 I so agree with you, so admire you, and so many others but please concerned dad there is proof from people on these forums that bracing does not work

Well Macky, you’ve certainly given me something to think about. The last thing I am trying to do is confuse young people. You note the conflicting messages, without my voice there would be less “conflict” and more acceptance of statements such as the one you made above “there is proof from people on these forums that bracing does not work” I try to be respectful and explore these issues from a scientific rather than emotional viewpoint.

Sharon, Pam and others are on guard, so to speak, for ridiculous claims made by non-traditional approaches to scoliosis treatment. Without them you would have people coming here hawking tea leaves and Vitamin D injections for the treatment of scoliosis. And there are clear-cut arguments to be made against whacky claims for “conservative” treatments. But bracing is another “conservative” treatment and there are a lot of people here on this forum giving it a shot. I have been trying to look at, learn, understand, and share discussions about what the scientific literature says about bracing. I have taken issue with (hopefully, respectfully) some of Sharons statements concerning the quality of the bracing research (and we’ll get back to the Fig 1 soon). Might these discussions ‘confuse’ young people here? Perhaps yes. If so, I am sure that between all of us we can try to clarify any of the issues we’re discussing. I am not so much concerned about ‘confusing’ young people here as I am about ‘discouraging’ young people here. And I think it would be easy to misconstrue some of the bracing research such that it seems discouraging. (And I am not saying that Sharon is misconstruing anything, perhaps that’s not the best choice of words.) But when Sharon says ” I have cut these researchers some slack on that lately. They still don't get a pass on obvious stuff but they get some latitude if they reel their conclusions in sufficiently.” Is it perhaps fair to say that our discussions have, at least, allowed us all to pause and rethink some issues.

I am not trying to paint a rosier picture on bracing than actually exists (indeed I was looking forward to some discussion about Coillards 22.9% and Dolans 22% ultimate surgery #’s).

I’m not sure if there are any young people following these discussions, but if there are, it would be nice if the discussion motivated them to learn about the science behind it. It is not trivial but it is not rocket science. It calls for an appreciation and understanding of the scientific method first and foremost. Something kids should be introduced to in grade school. If any of them are confused about this stuff, just join in the conversation.

Finally Macky, in the interest of not confusing or discouraging any young braced kids here, I have to take issue with your statement: “there is proof from people on these forums that bracing does not work”.Just because there are people on these forums who were braced as children and still needed surgery, it is not “proof” bracing does not work. The scientific data shows that 22% of people who are braced will go on to have surgery (just like a baby aspirin will not guarantee you escaping a second heart attack). I wouldn’t be a bit surprised to find that the vast majority of people who have had surgery were braced as a child. I guess I would expect it. The question is, what about the other 78% of people who were braced who DID NOT have surgery? You won’t find those folks on the surgery threads. And the whole point of this particular thread is what happened (and what would have happened) to those other 78% of the people who were braced but didn’t need surgery.

Dr. Dolan notes that we don’t know if any of them would have needed surgery even if they were not braced. That’s one definition (the need for surgery) to measure if bracing ‘works”.

I suggest that the Danielson data (for one) suggest that those 78% ended up with a smaller curvature (on average) than they would have if they were not braced. That’s another way to measure if bracing ‘works’.

By one measure we can say “we don’t know if bracing works”
By the other measure we can say “bracing works”

My main criticism of the Dolan data (criticism of the data, not Dr Dolan) is that there are 1953 total patients and only 139 of them were in the observation group. That’s just 7%. Is it surprising the results showed that we don’t know if bracing works to reduce the incidence of surgery?

Confusing? Perhaps
Discouraging? I hope not
Amateur analysis? Definitely

Few final comments.
Sharon - regarding the number of patients available for follow up in the Danielson paper – These were the patients from Sweden. They say that there is “very good opportunities offered by the Swedish healthcare system to retrieve patients for follow-up. They found 87% of the original Swedish patients and all of them came in for xrays.

Michele27 – Thank you

AILEA - I would be curious to hear why your daughter switched away from the SpineCor. Maybe you could reply here or perhaps more appropriately at the end of the “Why I decided to brace my Daughter with the Spinecor” thread.

Sharon, Re the controlled study, Danielson’s paper discusses the results from a controlled study. 15 years after bracing stopped. Two centers in Sweden, one braced, the other observed. 87% available for follow up. Published within the last 2 years. Why do you dismiss this? They are not making any wild claims.

Everyone - we are talking about bracing statistically "working". YMMV (Your mileage may vary)

Pooka1
03-04-2009, 04:18 PM
The last thing I am trying to do is confuse young people.

If people are confused it's not due to anything you wrote.


I have taken issue with (hopefully, respectfully) some of Sharon's statements concerning the quality of the bracing research

That's fine. I wish more people would comment on these matters.


Might these discussions ‘confuse’ young people here? Perhaps yes. If so, I am sure that between all of us we can try to clarify any of the issues we’re discussing.

Concur.


I’m not sure if there are any young people following these discussions, but if there are, it would be nice if the discussion motivated them to learn about the science behind it. It is not trivial but it is not rocket science. It calls for an appreciation and understanding of the scientific method first and foremost. Something kids should be introduced to in grade school. If any of them are confused about this stuff, just join in the conversation.

Absolutely.


Few final comments.
Sharon - regarding the number of patients available for follow up in the Danielson paper – These were the patients from Sweden. They say that there is “very good opportunities offered by the Swedish healthcare system to retrieve patients for follow-up. They found 87% of the original Swedish patients and all of them came in for xrays.

and...


Sharon, Re the controlled study, Danielson’s paper discusses the results from a controlled study. 15 years after bracing stopped. Two centers in Sweden, one braced, the other observed. 87% available for follow up. Published within the last 2 years. Why do you dismiss this? They are not making any wild claims.


Is this paper on line somewhere? I can't find it.

concerned dad
03-04-2009, 05:18 PM
That figure has no business being published without error bars period.

OK, well perhaps I should be the one dope slapped. Journals have requirements for reporting statistical data. As Sharon points out, it is important to understand the strength of an argument. Apparently this journal doesn’t require error bars. But they do apparently require a textual description of the statistics. I neglected to include it in my screen capture of the Figure. In my attempt to honor copyrights I did a disservice to the authors.

Here it is:

Figure 1 depicts the change in curve size from inclusion until the present follow-up in the initially braced group (0.4°, SD 7.0°), the group who were brace treated after progression 11.2° (5°–17°, SD 4.1°, P_0.0001 vs. braced patients) and the patients who were only observed throughout 5.8° (SD 5.7°, P _ 0.0011 vs. braced patients).

Now, I am certain that the 0.4 degree, SD 7.0 degree is a typo. (0.4 should read 4.0 and we can see this error right from reading the graph). I don’t think it is important enough to warrant a corrigendum (although that would be cool if CD got the Journal Spine to publish a correction):cool:. However, if that number (0.4) was used erroneously in the P calculations it certainly would warrant a corrigendum (the smaller the P value, the more significant the results, and these P’s are very very small). I’m pretty sure that all we need to calculate it is the sample size, the SD or the variance, the mean and someone smarter than myself. Anyway, I’m going to leave that for now.

Danielson goes on to say:

The differences in curve magnitude between the 2 original groups, bracing or observation at inclusion, at maturity and at the present follow-up 16 years after maturity were all statistically significant, even if they were within the measurement error.31–34

OK, well here is my mistake. I said earlier that if they were to plot error bars on Figure 1 they should be plotting the standard deviation of the mean. However, I took the standard deviation as the measurement error. The standard deviation is the variability of the curves for a particular group, not the accuracy with which we can measure them. So, instead of using 5/sqrt (N), it should be SD/sqrt(N). Fortunately it doesn’t matter too much because the three SD’s reported are close to the 5 degree measurement error I erroneously used.

It is interesting that they say all statistically significant, even if they were within the measurement error.31–34 I cant get those references, but here is 34:
Morrissy RT, Goldsmith GS, Hall EC, et al. Measurement of the Cobb angle on radiographs of patients who have scoliosis: evaluation of intrinsic error.
J Bone Joint Surg Am 1990;72:320–7.

Why still significant if within the measurement error? I guess we’ll have to take them at their word for now.

I don’t see anyplace this paper is available on line other than the abstract.

So what do you say Sharon? Any good with p values? We could be famous.
"Pooka1 and CD correct error in Spine Paper that escaped 6 orthopedic surgeon peer reviewers" Of course, the key is not just a typo, but them actually using that number to calculate significance.

Pooka1
03-04-2009, 06:03 PM
It is interesting that they say all statistically significant, even if they were within the measurement error.31–34

I don't understand this. I would need to run this past a friend of mine who can explain it if it is correct.

It is not clear to me how they handled the measurement precision and the error about the mean.

We still need to know the distributions of the types of curves in each group and make sure they are similar (i.e., no stacking).

christine2
03-04-2009, 07:17 PM
Concerned dad

I enjoy reading the info that is presented here. I have learned alot. It is also an inspiration to me not lay complacent but to be proactive and as informed as possible about my daughters scoliosis. I think that young people are being presented with information that is important for them to understand the science behind the choices that their parents are making about their treatment. There is so much negative out there but this discussion is giving us 2 sides (not 1 side) of the story. Keep it up!
I would also like to comment about how folks are asking for others to input on the discussion. That would be nice however when we try we are either stiffled or down right put down or insulted. A 13 year old girl tryed to voice her comment but was basically told to butt out she was to young and had no idea about the subject matter.


Finally, I have chosen to try bracing with my daughter. Right or wrong I don't know but I feel good about the decisions we have made. I would like to point out that one reason there may not be a large # of bracing success storys on this forum is because there is no need for them to be here. They do not need to search for the info anymore. Frankly after a couple years into this adventure and some very good results I backed off of reading and posting ?'s here. The only reason I still come is because I need to stay informed until that marvoulous day that we will have a definate prognosis.

christine2
03-04-2009, 07:27 PM
Concerned Dad

1 more thing. There is research being done at St Justines to develope a test for progression as well. It has been in the works for a while I remember reading about it a year or so back and heard that it may be availible soon. Did you hear about this. I think you said you were going back for a re check this month, can you ask Dr Rivard about it for us?

Pooka1
03-04-2009, 08:31 PM
There is so much negative out there but this discussion is giving us 2 sides (not 1 side) of the story. Keep it up!

:confused:

Negative? Two sides?

There is good science and there is everything else. So I guess that's technically "two" sides but only one counts.


I would also like to comment about how folks are asking for others to input on the discussion. That would be nice however when we try we are either stifled or down right put down or insulted. A 13 year old girl tried to voice her comment but was basically told to butt out she was to young and had no idea about the subject matter.

Speaking for myself, I meant folks who read these papers and/or have a background in science who can contribute. For example, we are in dire need of a statistician at the moment.

christine2
03-04-2009, 08:56 PM
Yes 2 sides. Yours and concerned dads. As I said before both sides help us parents make informed decisions.

Pooka1
03-04-2009, 09:01 PM
CD and I are on the same side... trying to understand the literature on this.

CD and I have our thoughts and feelings about the studies. But the studies themselves stand or fall on their own merit.

There is a reason the experts are scattered all over the map on the efficacy of bracing. And that reason stands irrespective of what CD or I think.

christine2
03-04-2009, 09:18 PM
Yes you are on the same side trying to decifer the stats. But you have seperate opinions on bracing. That is why I read on. I am better able to understand the papers when presented in laymans terms.

macky
03-05-2009, 01:37 AM
Ha. ha just loved the answers and all the wonderful people who replied.

Concerned dad you are not by any means confusing the young, you are putting it all out there for decisions to be made. Some others do though.

Yes, lay mans terms would be good for explaining it to those making decisions, I think its great for all the research going on too.
There are a lot of forums on the internet about scoliosis and bracing and a lot of opinions are similar to my own.

But I havent got my head stuck in the sand really I havent (ha!) but I just have this little niggle that for curves over 40 degrees well they can only be fixed and stopped by operations.

My thoughts, and my thoughts alone though.

Keep on keeping on guys I love reading the posts,
Macky xx

Pooka1
03-05-2009, 07:19 AM
There are a lot of forums on the internet about scoliosis and bracing

There are? More traffic than here?

Can you post the websites?

concerned dad
03-05-2009, 10:53 AM
We are all on the same side. If anyone is at fault for creating an environment that could be interpreted otherwise it is me. If we all just sit around and agree on everything it doesn’t put questions in my head and prompt me to seek out answers. As I said on another thread we are (I am at least) sort of using the Socratic method. In Socratic discussions there is often tension between participants. It would be worth a “Google” if anyone is interested.

Perhaps, on the topic of Bracing, Sharon tends to adopt the glass is half empty view and I lean to the glass is half full view. At the end of the day, there is still the same amount of water in the glass.
Why is it important to explore this? If a braced kid just reads the half empty view it can be discouraging. They need to have some hope to get thru the difficulty of being a teen let alone a teen in brace.
Similarly, it is discouraging for parents of braced kids to hear the half empty view. They/we need to hear it because it is life, and the head in the sand thing does no one any good. But sometimes it is worthwhile to explore the glass is half full view too.

Now Sharon, I hope you don’t mind me ‘painting’ you as the pessimist and myself as the optimist on this. I suspect you would prefer to be considered a ‘realist’. I’m just trying to get my point across.

I reread the posts above and I think Pam’s analysis of the definition, or problems with the definition of ‘work’ is very good. Maybe we should have stopped the discussion there. But, my point of the thread is to bring to light the different meanings of the word ‘work’ in this context. And to make the case that the scientific data, however limited it is, shows that bracing does “something”.

I’m not trying to answer:
If that “something” is enough?
Is that “something” permanent?
Is that “something” worth it?
Is that “something” positive?

I have a lot of respect for the people here who were braced as children and went on to have surgery. The issues in the surgery forum are so much more serious than some of the things we are dealing with here. They fall into that 22% that Dolan discusses. I guess you could say that they got a bum deal. It is understandable that many of them would be very pessimistic about bracing. In fact, they likely exercise a lot of restraint voicing their opinions on the topic out of respect for the kids on the forum who are braced. But, we have to admit that on a forum like this we are very heavily weighted with that 22% of folks who were braced and ultimately had surgery. The other 78% of formerly (successfully? needlessly?) braced people aren’t here. Furthermore, since surgery is such a serious issue, that 22% who are dealing with surgery, really, really really know the issues around scoliosis. Us parents of braced kids, well, we are hoping our kids fall into the 78% group. While we have a ‘horse in this race’, the issues are minor compared to the surgery discussions.

concerned dad
03-05-2009, 12:10 PM
Now, I am certain that the 0.4 degree, SD 7.0 degree is a typo. (0.4 should read 4.0 and we can see this error right from reading the graph).

It's not a typo, I'm an idiot. I must have looked at the curve wrong or something. Indeed the number is 0.4 degrees.

But, as far as the half full glass thing goes, it shows that for the braced kids, as a group, they had curves less than 1 degree from what they were when they started 16 years previously.

Maybe it would be worthwhile for everyone interested to have another look at that Figure 1.

txmarinemom
03-05-2009, 12:38 PM
I read back through the posts here, and this is really the last thing I have to say on the topic ...


Perhaps, on the topic of Bracing, Sharon tends to adopt the glass is half empty view and I lean to the glass is half full view. At the end of the day, there is still the same amount of water in the glass.

Why is it important to explore this? If a braced kid just reads the half empty view it can be discouraging. They need to have some hope to get thru the difficulty of being a teen let alone a teen in brace.

Similarly, it is discouraging for parents of braced kids to hear the half empty view. They/we need to hear it because it is life, and the head in the sand thing does no one any good. But sometimes it is worthwhile to explore the glass is half full view too.

I'm of the mind that although there's a "Bracing" category in the under 18 section, this isn't where this thread belonged. That's not said nastily (at all), CD, but not everyone understands the Socratic method of discussion, some thinner-skinned folk perceive the discussion is an argument, and the topic was far too scientific for most under 18's (and probably some adults).

Christine2, I'm fairly certain your quote below was aimed at me:


I would also like to comment about how folks are asking for others to input on the discussion. That would be nice however when we try we are either stiffled or down right put down or insulted. A 13 year old girl tryed to voice her comment but was basically told to butt out she was to young and had no idea about the subject matter

It was very obvious (or was to me, anyway) when mention of past and current studies/papers, and systematic review of data to conclude whether bracing "worked" (an intentionally subjective term), where the topic was headed. You yourself said you didn't quite get it all:


I am better able to understand the papers when presented in laymans terms.

Despite your perception I told a 13 to "butt out", I was not rude: I simply meant an answer of ...


trust me on this one!)

Dear concerned dad,

bracing does work. i wore a brace for over 2 years. before my treatment, my curvatures were 37 degrees. today (still in a brace) they are 25 degrees.

... was NOT what was being discussed - and it wasn't.

If you think it WAS, I'd be interested to hear a compelling rebuttal.

Again, I think discussions of bracing RESEARCH that get this technical should be placed in adult swim, but that's just me.

Pam

Pooka1
03-05-2009, 01:36 PM
Perhaps, on the topic of Bracing, Sharon tends to adopt the glass is half empty view and I lean to the glass is half full view. At the end of the day, there is still the same amount of water in the glass.

Actually I adopt a "the literature is a miasma but that doesn't mean that bracing can't work for some" view. :)

Pooka1
03-05-2009, 01:40 PM
The issues in the surgery forum are so much more serious than some of the things we are dealing with here.

Actually, in my opinion, JIS is far more serious than AIS in a kid old enough to be fused. It's not even close in my mind.

The fusable AIS cases can be fixed and sometimes cured NOW. Viable treatments for JIS including non-fusion surgery are still being studied but look promising.

Pooka1
03-05-2009, 01:43 PM
Maybe it would be worthwhile for everyone interested to have another look at that Figure 1.

What would be more interesting to me is to see the distribution of curve magnitudes and types for each of the three groups.

But what would really interest me is seeing the error bars on that figure (which will subsume all the data I'm guessing).

mamandcrm
03-05-2009, 02:00 PM
Hi Sharon,

I was looking back through some recent posts on this thread and I re-read again your statement about your girls and their scolioses-es. This is a bit off-topic and none of my business if you prefer not to respond, but has anyone ever given you any theories you find plausible as to why your identical twins seem to be on different paths? Has anyone looked at scoliosis in identical twins? It suggests to me something environmental (by that I mean, different types of activity each did, or something of that sort, not exposure to something)--certainly it's puzzling...

Pooka1
03-05-2009, 02:12 PM
Hi Sharon,

I was looking back through some recent posts on this thread and I re-read again your statement about your girls and their scolioses-es. This is a bit off-topic and none of my business if you prefer not to respond, but has anyone ever given you any theories you find plausible as to why your identical twins seem to be on different paths? Has anyone looked at scoliosis in identical twins? It suggests to me something environmental (by that I mean, different types of activity each did, or something of that sort, not exposure to something)--certainly it's puzzling...

Well, for one thing, I don't think they have AIS but rather scoliosis linked to some connective tissue disorder.

For another, there are known differences between identical twins besides (micro)environment (e.g., gene copy numbers and epigenetic changes) that might control aspects of curves.

Still, it is amazing that the one kid was so rotated so early and the other is still not rotated much at all at ~40*. They both have the same basic curve though, right T with apex at T9.

I don't think this has been looked at in a serious way in the literature. Early on, our surgeon thought that Willow would have ~80% of progressing to surgery no matter what just by virtue of the fact that her ID twin needed surgery. Then when he saw the radiograph of her in the bending brace, he gave her a ~60% of avoiding surgery. So this guy swung from a 20% chance to a 60% chance for Willow to avoid surgery, all within a matter of a few months. It's all guesswork if you ask me.

PNUTTRO
03-05-2009, 02:16 PM
What would be more interesting to me is to see the distribution of curve magnitudes and types for each of the three groups.

But what would really interest me is seeing the error bars on that figure (which will subsume all the data I'm guessing).

The statistics are in the tables. You really have to mull it over to see what all the numbers are, but there they are. Maybe you could replot the data for us.

In case you still don't have the reference article:

A prospective study of brace treatment versus observation alone in adolescent idiopathic scoliosis: a follow-up mean of 16 years after maturity.
Danielsson AJ, Hasserius R, Ohlin A, Nachemson AL.
Spine. 2007 Sep 15;32(20):2198-207.

PNUTTRO
03-05-2009, 02:18 PM
Has anyone looked at scoliosis in identical twins? It suggests to me something environmental (by that I mean, different types of activity each did, or something of that sort, not exposure to something)--certainly it's puzzling...

See this thread.

http://www.scoliosis.org/forum/showthread.php?p=72477#post72477

Pooka1
03-05-2009, 02:20 PM
I have the Danielsson ref but can't find the article online. I would have to go to a medical library to get the article or pay an exorbitant fee for it online.

leahdragonfly
03-05-2009, 02:46 PM
I have discovered that some of the medical journals will grant free access to articles for patients. I don't remember which journals they are right now, but it's worth checking in to.

I have been able to access some pertinent scoliosis articles by sending a short e-mail to the journal stating my name and requesting access to the article as a patient. I received a link to the article within 24 hours or less. Pretty cool. Some of the journals have info about this at the bottom of the page, below where they offer you the article for the exorbitant fee.

PNUTTRO
03-05-2009, 02:53 PM
I have discovered that some of the medical journals will grant free access to articles for patients. I don't remember which journals they are right now, but it's worth checking in to.

I have been able to access some pertinent scoliosis articles by sending a short e-mail to the journal stating my name and requesting access to the article as a patient. I received a link to the article within 24 hours or less. Pretty cool. Some of the journals have info about this at the bottom of the page, below where they offer you the article for the exorbitant fee.

Sometimes its just a matter of contacting the author directly. They are usually willing to share.

PNUTTRO
03-05-2009, 10:03 PM
Perhaps, on the topic of Bracing, Sharon tends to adopt the glass is half empty view and I lean to the glass is half full view.


CD, I think that the take home message from your graph is that after skeletal maturity and in the long term, all curves progress in a parallel fashion. So maybe bracing helped some of those kids to prevent a surgery down the road.

The only other comment I would make regarding the figure is that "on average" none of the patients had curves greater than 45 degrees. So maybe this wasn't the best cohort to review.


p

concerned dad
03-06-2009, 12:04 PM
CD, I think that the take home message from your graph is that after skeletal maturity and in the long term, all curves progress in a parallel fashion. So maybe bracing helped some of those kids to prevent a surgery down the road.

Not sure I agree on that. They just have 3 points for each curve. It is possible that for the braced cohort, the curves soon (within 2 years say) went to prebrace amplitudes and stayed there.

Also possible that the observation group continued to progress for a short time after the study ended and then stabilized.

But, of course, your take home message may be true too. With just 3 points we dont know


The only other comment I would make regarding the figure is that "on average" none of the patients had curves greater than 45 degrees. So maybe this wasn't the best cohort to review.

On the UK forum someone made a really good case that by including the large curves you are loading the deck against demonstrating bracing efficacy since most 45 degree curves in a growing child would be expected to progress bracing or not.

PNUTTRO
03-06-2009, 01:34 PM
Not sure I agree on that. They just have 3 points for each curve. It is possible that for the braced cohort, the curves soon (within 2 years say) went to prebrace amplitudes and stayed there.

Except for the early bracing group, on average, the last time point is higher the the pre-braced time point. So the brace in most cases "worked"--which I believe has been you point all along. The timing is irrelevant.

. . .but still the outcome is still the same. After skeletal maturity, there is little progression, on average, for all groups in the long term.

And unless any of these individuals had pain, surgery would not be indicated. So the question of bracing, seems to me, to be a decision of preference based on the data from this study.



On the UK forum someone made a really good case that by including the large curves you are loading the deck against demonstrating bracing efficacy since most 45 degree curves in a growing child would be expected to progress bracing or not.

I would think that it would be best to include all groups, don't you? Especially if you want to say that bracing "works".


WARNING My opinion:

I think that bracing can be an effective and inexpensive tool to prevent progression of curves. The user must decide if wearing a brace at this time of my life--which makes me self conscious or otherwise uncomfortable--outweights the risk of MAYBE having surgery or a different body image down the road. That's a hard concept for a teenager.

Having a discussion about the research that supports or refutes a brace "working" is futile, because the best indicator for a positive outcome after bracing is the compliance of the patient. . . .but I am sure that someone will disagree with that as well.

p

christine2
03-06-2009, 05:44 PM
Having a discussion about the research that supports or refutes a brace "working" is futile, because the best indicator for a positive outcome after bracing is the compliance of the patient. . . .but I am sure that someone will disagree with that as well.

P
I think you are absolutley right! A brace is only going to have a chance to do something if the wearer is compliant. My daughter is too young to understand the stats, however everytime she sees the results of her compliance it motivates her. The Spinecor is working for us and it is so easy for her to wear that it is not even an issue. We do have an advantage that my daughter is so young and it is like 2nd nature for her to be in brace. I can not speak for AIS kids.

mamandcrm
03-06-2009, 07:45 PM
I think sometimes that that is both the blessing and the heartbreak of the JIS kid--mine (and others) seems to tolerate it so well because she doesn't think about it, it's part of her life, but it breaks my heart to think about her in it for 7-8 years.

Pooka1
03-06-2009, 09:03 PM
Having a discussion about the research that supports or refutes a brace "working" is futile, because the best indicator for a positive outcome after bracing is the compliance of the patient. . . .but I am sure that someone will disagree with that as well.

Compliance is certainly a confounder at this point but why do you think that perfect compliance will produce obvious evidence of efficacy?

txmarinemom
03-07-2009, 01:33 AM
Having a discussion about the research that supports or refutes a brace "working" is futile, because the best indicator for a positive outcome after bracing is the compliance of the patient. . . .but I am sure that someone will disagree with that as well.

Okay, I know I said I was done commenting here, but I couldn't pass this one up ...

Regardless of whether or not I personally think bracing "works", I don't necessarily disagree with P's point. IF a brace is destined to be effective in the post-bracing period for a particular patient, efficacy will probably by increased by storing the brace on the patient's BODY (vs. a closet).

Pam ;-)

PNUTTRO
03-07-2009, 08:17 AM
Compliance is certainly a confounder at this point but why do you think that perfect compliance will produce obvious evidence of efficacy?

Sharon
I think that logging compliance will give a better idea.

I had prepared in my head a hostile response to this thread, but I had a change of heart.


I get involved in these types of discussions, mostly because when anyone tries to take a absolutist's viewpoint on any topic, I cringe. I try to point out that we cannot put everyone in the same box. Not everything is black and white, right or wrong.

The things we do to help ourselves are the best we can do at the time. Maybe I could have worn a brace for years, maybe I could have avoided surgery, but the fact is that based on the recommendation of 3 doctors that my mother trusted I had surgery at 16. She hated it! I never realized the guilt she felt from it until I was much older. The doctors told her I was cured, but a short time later, she realized that I had pain. She had tremendous guilt and regret I don't blame her for what happened or the decisions she made on my behalf.

And yes we have come a long way since 1986, but really are there any guarantees when it comes to individuals.

People are people. I like that everyone is different. I like that we have different preferences. I like that I can decide what is best for me or my kid. I like the idea of a brace over surgery. But as I tried to point out earlier, bracing is an individual decision and one that I will not say is right or wrong.

p

Pooka1
03-07-2009, 08:37 AM
I haven't seen anyone disagree with most of what you wrote.

W.R.T. absolutist positions, I don't think it's too early to say that the bracing literature is absolutely a miasma. Now there are very good reasons why it is a miasma in my opinion but it is still arguably a miasma.

Essentially, there are no positions, absolutist or otherwise, to extract from it. It is not dispositive of anything.

Others may disagree.

debbei
03-07-2009, 08:47 AM
Compliance is certainly a confounder at this point but why do you think that perfect compliance will produce obvious evidence of efficacy?

I always wore my brace to the letter of the law. I was always one of those kids who did exactly as she was told; actually, I was afraid not to wear it when I was supposed to for fear I would get worse. :)

Anyway, a lot of good it did me......

concerned dad
03-07-2009, 10:36 AM
when anyone tries to take a absolutist's viewpoint on any topic, I cringe

Me too.

but I dont think there we've seen absolutist's viewpoints expressed. There are always qualifiers implicitly or explicitly applied.

And when it comes to bracing efficacy, it's important for us to remember we are talking in a statistical sense about our (amateur) interpretation of the results. Individual results do vary.
There are a lot of confounders. Probably more than we have even thought of.
But, I think the key will involve carefully applied statistics along with good science (although I do think part of the good science does NOT necessarily HAVE TO involve a random trial. It would sure help, but there are still things we can learn w/o one).

concerned dad
03-07-2009, 10:40 AM
Regardless of whether or not I personally think bracing "works", I don't necessarily disagree with P's point. IF a brace is destined to be effective in the post-bracing period for a particular patient, efficacy will probably by increased by storing the brace on the patient's BODY (vs. a closet).

Pam ;-)

Well said.

Pooka1
03-08-2009, 10:31 AM
You know what I'd like to see?

I'd like to see ALL the individual trajectories plotted on three separate graphs, one for each of the the three groups and with error bars on each point, rather than just the averaged points for each of the three measurement times. It would be busy but might be informative as to the actual scatter and non normality in the data.

Then I'd like to see each of the three graphs broken out into curve type, again with all the individual trajectories plotted with error bars. So nine graphs.

txmarinemom
03-08-2009, 12:41 PM
... Then I'd like to see each of the three graphs broken out into curve type, again with all the individual trajectories plotted with error bars. So nine graphs.

Curve type?

Pooka1
03-08-2009, 02:36 PM
Curve type?

Thoracic
Lumbar
Both (S)

txmarinemom
03-08-2009, 07:21 PM
I personally think 3 types of curves are an oversimplification. It sounds like your term "both" indicates double major/double structural curves: There's also thoracolumbar, but even the addition of that category isn't enough.

Thoracic curves alone can differ (at the very least) based on curve convexity, apex location, kyphosis, and axial rotation of the apical vertebra. How would you propose to assemble a "standard" study group?

Regards,
Pam

Pooka1
03-08-2009, 08:24 PM
Gotta start somewhere.

If those data are too scattered, I'd break it down further.

concerned dad
03-09-2009, 11:50 AM
Gotta start somewhere.

If those data are too scattered, I'd break it down further.

The three curves in the original figure are not scattered, why break it down in the first place?

To look at more subgroups you would need a larger sample size to maintain significance.

Perhaps it would be useful to answer more questions, but the fundamental question of "does bracing have any measureable effect" seems to be addressed by the figure.

Pooka1
03-09-2009, 09:12 PM
The three curves in the original figure are not scattered, why break it down in the first place?

Well, for one, we have some evidence T curves and L curves respond differently to bracing. Lumping them together is not correct per se.

The Slice
03-11-2009, 11:14 AM
Well, I see there's a lot of debate over statistics here. As a person who as gathered some info on scoliosis (as a hobby of sorts) let me add a couple of thoughts. I think everyone has come to the same conclusion that this is not an exact science. Remember that years ago, people braced for scoliosis, were typically braced with a Milwaukee brace, or something of that nature. Through the years, there have been fewer and fewer Milwaukee type braces used as the evidence has shown that the cervical curve will usually correct itself. The exception is a double major curve that is very high (primarily involving the cervical and thoracic spine). What I've always understood, is that the idea of bracing is not to correct, or "cure" the scoliosis, but to attempt to slow the progression of the curve until the child has reached the majority of their skeletal growth. I would imagine that during this time, there are more chances for permanent deformation of the bones and am wondering if this could also have an effect on the severity of scoliosis. A couple of you have spoken about having surgery later in life after supposedly being "cured" of scoliosis in childhood/young adulthood. I wonder how many of those who have found severe curves later in their 40's, 50's, and 60's have other reasons for the progressing curves such as osteoporosis. Of course, the reason for trying to slow the progression is to decrease the chances of surgery, and more importantly, keep the degree of curvature low as this along with other factors such as age at the time of surgery can affect the degree of correction. Well, why not send them right to surgery? The fact is that going under the knife is risky, and if you can avoid the risk, and all the other things that go with the surgery, why not? The other reason for the delay is that the spine growth is in the last part of the growth spurt of adolescence (this is why so many kids look so long limbed and often times very skinny). The point is that if you do the surgery too soon, you may end up with a shorter torso which can affect the organs both in the chest and abdomen. I can't say anything based on experience, but I think if it were me, or a child that I was responsible for, I'd want to go for the bracing if it meant that I could either avoid surgery, or significantly affect the outcome of surgery in a positive way. Yeah, I have a good idea what some of you are going to say to that, but consider this, while it is true that many kids have a hard time dealing with the brace, there are plenty of others that have done just fine with it. Again there are so many different variables involved here as well including how well the brace is fitted, attitudes of both the child and their parent(s), and more. The bottom line here is to get the best possible outcome for medical reasons first, and cosmetic reasons second, at the least risk to the person's health and or safety.

tonibunny
03-11-2009, 02:33 PM
The other reason for the delay is that the spine growth is in the last part of the growth spurt of adolescence (this is why so many kids look so long limbed and often times very skinny). The point is that if you do the surgery too soon, you may end up with a shorter torso which can affect the organs both in the chest and abdomen.

This is interesting, where did you hear this? I have always been told that by about 13 the spine has stopped growing, and by the age of 10 it has reached about 80% of its potential adult size - and that after this, most of the growth will be in an adolescent's limbs.

I was fused from T1-T12 at 10, with a residual curve of 45 degrees/35 degrees, yet I don't look noticeably short in the torso and have no probs from this. The only way it affects me is that straps on tops sometimes need adjusting or they fall down :D

Having said that, I also agree that it's preferable to put surgery off for as long as possible, and would rather any child of mine wore a brace rather than went straight for surgery (I wore a Milwaukee and plaster bodycasts for years as a child, and TLSOs post op, so I know what they're like).

debbei
03-11-2009, 02:38 PM
I wonder how many of those who have found severe curves later in their 40's, 50's, and 60's have other reasons for the progressing curves such as osteoporosis.

Nope, no osteoporosis in my case. I just kept on progessing like crazy as I got older. If I kept going another 20 years without surgery, both my curves would probably have reached 100 degrees by then. There would be nothing left of my torso.

Karen Ocker
03-11-2009, 05:42 PM
I had excellent bone density measurements and normally formed vertebrae--other than the wedge shape from progressing scoliosis--- and my spine marched to its own drummer.:rolleyes:

Pooka1
03-11-2009, 05:56 PM
First, it is not true that the spine matures last after the limbs according to our surgeon IIRC. I'm trying to remember... it's in one of my earlier posts... I think he said there is no set pattern.

Second, I have been thinking about what our surgeon said about the reason why the average adult has a far harder time than the average kid with the surgery. He said it was because they have other problems that need fixing besides the curve. That suggests to me that simply having scoliosis for years and years may necessarily cause further and other damage if not corrected early.

If that is true, and if the new instrumentation is all that it is claimed to be in the long run, then that would argue for early fusing all curves with any reasonable chance of progressing to surgery territory over a life time.

It sounds reasonable. There is really no other rational explanation I have heard for the huge difference in recovery between the average kid and average adult getting fused. Also, the earlier fusion may allow a shorter fusion.

Just some thoughts.

The Slice
03-12-2009, 03:26 AM
Sharon, I'm not going to tell you that you or your doctor are right or wrong, but I offer this bit of info from the BBC series "Teen Species". You can check out the website based on the series at http://www.bbc.co.uk/science/humanbody/body/articles/lifecycle/teenagers/growth.shtml

The part to which I refer is the following which is either a paraprasing, or transcription from the series regarding skeletal growth: "Regular trips to the shoe shop and trousers that rapidly become too short are common occurrences during puberty.
In their teens, children put on an amazing growth spurt to reach their final adult height. At their fastest, boys can grow taller by as much as 9cm a year and girls at a rate of 8cm a year. It's no wonder teenagers are clumsy. Their body is shooting upwards at a speed their brain simply cannot keep up with.
Outside-in
This phenomenal growth starts at the outside of the body and works in. Hands and feet are the first to expand. Needing new shoes is the first sign of trouble.
Next, arms and legs grow longer, and even here the 'outside-in' rule applies. The shin bones lengthen before the thigh, and the forearm before the upper arm.
Finally the spine grows. The very last expansion is a broadening of the chest and shoulders in boys, and a widening of the hips and pelvis in girls."

I copied just the text of the applicable section. If you look around at kids nearing puberty, one of the obvious ways you can tell that they have arrived is the growth spurt. One of the most obvious things is that their arms and legs are disproportionately long compared to their torso for some time. It's what gives them that gangly, or spindley appearance. Another part of that is that the bones lengthen faster than they gain mass as do the muscles. That's the other significant reason why pubescent kids sometimes look as if they might be anorexic. As you will see by reading the info further, that's why kids, especially boys seem rather uncoordinated for a while. It's because the skeletal growth is so rapid compared to muscle growth that until the muscles catch up, they're actually somewhat undersized. The other part to that is that it takes more time for the brain to get used to the physical change in the body, and the change in center of gravity.

Pooka1
03-12-2009, 07:27 AM
Well, maybe there is as much consensus on this among experts as there is on the efficacy of bracing which is to say little to none.

Pooka1
03-12-2009, 09:26 AM
By the way, here is another quote from the same BBC site:

femur (http://www.bbc.co.uk/science/humanbody/body/factfiles/bonegrowth/femur.shtml)

"Long bone growth comes to an end around the end of puberty. When long bone growth stops, you stop getting taller."

Now if you stop getting taller when long bone grow stops then that means either that the spine has previously stopped growing or that the growth remaining in the spine is not significant to change height.

The Slice
03-12-2009, 04:13 PM
From what I understand, in many cases, doctors are looking for the point where there will be minimal effect to the spinal growth, not when bone growth has stopped. I believe that in many cases, at least for the girls, the point at which the doctor says that they are skeletally mature enough for spinal surgery is at or after the start of menarche. For the most part, girls usually don't grow more than about 2" once menarche has started. This of course would also correlate with what you were saying. The point here is that if scoliosis is detected early relative to the start of menarche, the hope is that by bracing them, until they are mature enough for surgery, that the progression of the curve(s) can, if nothing else, be slowed down. Where this can be a benefit is if there are other contraindications to surgery, and if the growth can be slowed down, perhaps it can be kept at a level where surgery would not absolutely be necessary. Another benefit is that the smaller the curves pre-surgery, hopefully the better the correction that can be achieved. The bottom line here is that there is no absolute as you're talking one about the human body, not a robot, and you're talking about the fact that humans are caring for the child. There are so many variables there such as complicity from the child, the fitting of the brace just to name a couple. I suspect that the medical community is already gearing toward the idea that bracing, depending on the severity of the curve, and the age of the child is more likely aimed at optimizing the surgical outcome as much, or more so than preventing surgery. From the stories I 've read, it seems as if surgery is ultimately inevitable uness the diagnosis happens early, and the curve is relatively small. There's a caveat here too. If the doctor doesn't recommend bracing either instead of, or until surgery is possible, they may run the risk of a malpractice suit for negligence. Unfortunately we have gotten into a really litigious society, and this only complicates things even more.

concerned dad
03-12-2009, 04:49 PM
From the stories I 've read, it seems as if surgery is ultimately inevitable uness the diagnosis happens early, and the curve is relatively small.

I'm not sure if I understand or agree with this. It seems to me that the argument AGAINST bracing is that most curves would not have progressed to surgical levels anyway. And hence, bracing has the effect of overtreating many to save a few. (not that I agree with this argument)

SARAHR1999
03-13-2009, 08:59 AM
Started with a 47 degree curve now in the brace only two months and it is 24 degrees. Boston Brace works great

SmileyGirl8
04-02-2009, 09:31 PM
All you really have to do is to belive. I belive that it will work because I have people around me saying that it will work. My doctor says 100% well maybe not 100% but it does work. So thats what I belive in.:)

Dina
04-27-2009, 03:59 PM
The million dollar question: "Does Bracing Work?".

I submit the clear answer is YES

Now, I know that this is something that we've discussed on other threads here. I've been wrestling with this concept for a while.

Here is the caveat: It all depends what is meant by the word "work".

Dr. Dolan and the BrAIST team in Iowa have made a compeling case that we dont know if bracing works to reduce the incidence of surgery.

What they have not done (or attempted to do) is to show that we dont know if bracing works to alter the natural history of AIS. That's because we do know that it indeed alters the natural history.

A very knowlegable poster on this forum often says
Surgery is the only proven option to reduce and stabilize curves permanently.

That assertion has always bothered me. The whole "permanent" thing bothers me because the "surgical Revision" thread on this forum is so large. What also bothers me is the "end point" used in the statement: "reduce and stabilize".

The very recent Danielson paper that looked at the Swedish patients involved with the 1995 SRS bracing study makes the following conclusion:

We therefore think that the basic findings, that well-performed brace treatment can stop curve progression and that observation will allow some curves to progress until treatment is needed, are still valid.

There are loads of other papers that show bracing alters the natural history. The BrAIST study is designed to see if it alters the ultimate need for surgery.

Surgery, that is what Dr Dolan says we should worry about. I dont know, it seems we should worry about both curve stabilization (and reduction for the case of the SpineCor) and surgery.

Now, we can argue the difference between "thinking" something and "knowing" something. We can discuss the merits of the papers. We can discuss the ethics of the research. But, it seems pretty clear that bracing does indeed work so far as stabilizing curves when compared to observation. If Dr. Dolan had done her systematic review using that criteria the results would have been dramatic.

Just my opinion and subject to change.

Hi.

This is probably the hardest question to deal with when you have scoliosis or are the family of a scoliosis patient.
We have thought it through A LOT of times, but we ended up deciding that we wanted to give the brace a chance because we couldn't live with the thought that we could make things worse if we didn't choose the brace.

Now I've worn a Boston brace for over a year and we just got new pictures, which said that the degrees was getting worse, despite the fact that I've worn the brace as much as I should. That really makes things difficult, because it's much harder to live with something like that, when you doesn't believe in the effect of it.

But who knows - maybe it would have been worse if I hadn't worn the brace at all? Like you said - it depends on what you mean about the "work". And it also depends on so many other things, that it's hard to see what is working and what isn't.

Just a little contribution and a bit complaining, too ;)

Rosebud9
04-28-2009, 08:12 PM
The brace does not fix the spine completely. but there is a dramatic difference. i know because I'm a 9 year old girl who wears a brace. I had a x-ray with it on and my curve was definitly straighter.