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LindaRacine
04-04-2009, 09:33 PM
Ultra-long-term follow-up of pediatric spinal deformity problems: 23 patients with a mean follow-up of 51 years.
Winter RB, Lonstein JE.

Twin Cities Spine Center, 913 East 26th Street, Suite 600, Minneapolis, MN, 55404, USA.

BACKGROUND: The aim of this study was to analyze the true outcomes of a unique cohort of patients with spinal deformities who were treated as children and followed for 40 or more years. METHODS: Altogether, 23 patients were reviewed who had been originally treated in our community, whose original charts and radiographs were still available, and who had undergone recent evaluation. RESULTS: The diagnoses were congenital deformity in eight, adolescent idiopathic scoliosis in four, poliomyelitis in three, infantile idiopathic scoliosis in two, spondylolisthesis in two, and one each of tuberculosis and dwarfism. Sixteen had undergone fusion surgery. CONCLUSIONS: Early spine fusion for deformity produced far better results than delayed fusion. A solid fusion at the end of growth remained unchanged. Degenerative changes outside the fusion area were rare and seldom required further surgery. In summary, 23 patients with a mean follow-up of 51 years after treatment are presented. Early fusion was far superior to delayed or nonsurgical treatment.

laurieg6
04-05-2009, 01:47 AM
Thank you for posting this abstract. It is very reassuring/comforting to me.

Dingo
04-05-2009, 06:35 PM
Degenerative changes outside the fusion area were rare and seldom required further surgery

That's pretty interesting. Scientists suspect that fusion causes degeneration on adjacent vertebrae but they can't absolutely prove it. Although this is a small sample it runs counter to their assumptions.

Early fusion was far superior to delayed or nonsurgical treatment.

Once again early treatment is found to be the most effective for this or almost any other disorder. It make me wonder why bracing is discouraged before 25 degrees.

Pooka1
04-05-2009, 08:55 PM
[COLOR="RoyalBlue"]Once again early treatment is found to be the most effective for this or almost any other disorder. It make me wonder why bracing is discouraged before 25 degrees.

I suspect it is because it is an extremely arduous treatrment and there is no good evidence it will work in any case.

Bracing is not in the same league as fusion surgery in terms of treating/curing scoliosis.

Dingo
04-05-2009, 09:06 PM
I don't know if I'd go that far.

I suspect it is because it is an extremely arduous treatrment and there is no good evidence it will work in any case.

23/7 bracing in a hard brace sounds pretty heroic. But night bracing (although not exactly a great time) seems a lot more doable for most kids. There is a lot of evidence that bracing works for some kids.

Pooka1
04-05-2009, 09:12 PM
There is a lot of evidence that bracing works for some kids.

News to me.

What is this evidence that bracing works? Can you cite any papers?

Did you know the bracing literature is a miasma?

Dingo
04-06-2009, 08:53 AM
There must be 100s of studies that have found bracing to be effective.

Google search: scoliosis bracing effectiveness (http://www.google.com/search?hl=en&q=scoliosis+bracing+effectiveness)

I'm not saying that I couldn't find a page of counterevidence as well.

But I wouldn't say that there is no good evidence that bracing helps some kids. Adding the whole thing up my sense is that bracing helps some kids, particularly if they have smaller curves. Anything over 30 degrees is hit and miss. If my child had a progressive curve that wouldn't respond to bracing and it was approaching 30 degrees I'd strongly consider VBS (http://www.vertebralstapling.com/).

Did you know the bracing literature is a miasma?

I had never heard of a Miasma (http://en.wikipedia.org/wiki/Miasma_theory_of_disease) before. "poisonous air?" :eek:

concerned dad
04-06-2009, 11:04 AM
There must be 100s of studies that have found bracing to be effective.



This is going to be a journey
:D

It all depends on what you mean by "effective".

I suppose the best evidence that scientists dont know if bracing avoids surgery is the very existence of the Braist trial.

I originally equated it with unethical research. After looking into it further, I found I was wrong. But bottom line, if they thought bracing was effective at avoiding surgery they would not ethically be able to conduct the random controlled BrAIST trial. They ARE performing the RCT. Therefore they DO NOT currently know if bracing avoids surgery.

The last big RCT by the SRS in 1995 (Nachemson) had problems. It wasnt really random, the curves types were stratified between braced and unbraced groups, and they defined "failure" as an increase in curve of 5 degrees or more. (The argument is, if a curve goes from say 20 to 25 degrees unbraced, is it really a "failure").

You may be interested to read some of the research from the folks in Iowa (Lori Dolan). pretty interesting stuff.

Dingo
04-06-2009, 12:12 PM
You may be interested to read some of the research from the folks in Iowa (Lori Dolan). pretty interesting stuff.

I would love to read anything pro/con on bracing.

From what I've read bracing appears to work for a lot of kids, especially those with curves less than 35 degrees. It's hard for scientists to determine how effective bracing is because compliance is based on the honor system. How can anyone know if a child is using it as prescribed?

The results of surgery are easy to study because the human element is taken out. That doesn't mean that surgery is better, it's just very easy to study.

concerned dad
04-06-2009, 01:31 PM
(The argument is, if a curve goes from say 20 to 25 degrees unbraced, is it really a "failure").



I found the quoted "argument". Goldberg says it better

As pointed out by Skaggs,31 an untreated thoracic curve progressing from 25 to 35 but at maturity being acceptable cosmetically and not requiring surgery would be regarded as a success by the child who had had an untrammeled adolescence.

Pooka1
04-06-2009, 03:22 PM
But I wouldn't say that there is no good evidence that bracing helps some kids.

Maybe you wouldn't say that but plenty of orthopedic surgeons say it.

Did you know there are surgeons who don't brace and are still not sued for malpractice?

If there was good evidence that bracing worked, how do you explain that?

The literature is a miasma. That's how I explain it.

Pooka1
04-06-2009, 03:29 PM
I found the quoted "argument". Goldberg says it better

As pointed out by Skaggs,31 an untreated thoracic curve progressing from 25 to 35 but at maturity being acceptable cosmetically and not requiring surgery would be regarded as a success by the child who had had an untrammeled adolescence.

They may have an untrammeled adolescence but what percentage of kids with a 35* curve avoid later fusion surgery?

The results of the ultra long term study and what our surgeon told us about why most adults have a far harder time than most kids with the surgery are all in keeping with the thought that fusion at the earliest possible time is the best, most definitive option.

For example, although our surgeon claims that if my daughter can emerge from adolescence with a <50* curve and expect to be stable for life, the testimonials on here belie that claim. I think that's why some surgeons will fuse kids who are less than 50*... they have seen the results of not doing so.

concerned dad
04-06-2009, 04:07 PM
They may have an untrammeled adolescence but what percentage of kids with a 35* curve (CD edit - at skeletal maturity)avoid later fusion surgery?



Darn good question.
I would guess the vast majority of kids who reach skeletal maturity w/ a 35 degree curve will indeed avoid later surgery.

Dingo
04-06-2009, 04:19 PM
Pooka1

Did you know there are surgeons who don't brace and are still not sued for malpractice?

I'm not a lawyer but I would guess that's true because you can't absolutely prove or disprove if bracing will work in any given case. It's impossible to know.

BTW I know that we are all in the same boat trying to help our kids. It's hard to know what to do.

Pooka1
04-06-2009, 04:36 PM
Darn good question.
I would guess the vast majority of kids who reach skeletal maturity w/ a 35 degree curve will indeed avoid later surgery.

So our surgeon says.

But there are any number of folks just in this little sandbox who progressed to needing fusion despite being at skeletal maturity and at a then-sub-surgical angle.

I am going to ask our surgeon if he has a hypothesis to explain that.

Pooka1
04-06-2009, 04:41 PM
Pooka1

Did you know there are surgeons who don't brace and are still not sued for malpractice?

I'm not a lawyer but I would guess that's true because you can't absolutely prove or disprove if bracing will work in any given case. It's impossible to know.

Exactly. Thus we don't know if bracing works. That's where the literature has left us.


BTW I know that we are all in the same boat trying to help our kids. It's hard to know what to do.

Indeed. While nobody has shown that bracing works, equally nobody has proven it can't work.

The one thing I have been told by our surgeon is that my fused kid is done with scoliosis ("One stop shopping for surgery for her"). The unfused kid suffers an uncertain future though one that likely will include a harder surgery down the road than had she been fused as a teenager. She clearly got the short end of the stick compared to her sister.

concerned dad
04-06-2009, 04:46 PM
Darn good question.
I would guess the vast majority of kids who reach skeletal maturity w/ a 35 degree curve will indeed avoid later surgery.

Linda, you used to have a link on your website with information discussing curve progression after skeletal maturity. You still have the link but that link no longer works. I am having a hard time finding data to support my assertion above.
I'm probably wrong..... wouldnt be the first time.
:D

I have to admit, I dont really follow the surgical part of this forum. I wonder if, anecdotally, there are many people here who would fall into this scenario.

LindaRacine
04-06-2009, 06:33 PM
Hi...

I know. My site is woefully out of date. I've been laid off (starting next Monday), so I'm hoping to get a comprehensive update complete. The chart was from a paper by Stuart Weinstein. Here's a copy:

http://www.scoliosis-australia.org/images/doc_table.gif

--Linda

hope404
04-06-2009, 06:54 PM
Talk about being in the same boat.

When my 18 yr. old daughter hit 32T/36L ... looking at her x-ray I just couldn't see her future without back issues. The intervetebral disc's ,on the inner part of the curve ,were already so squeezed and under stress.

What is a parent to do ????? Brace at 18 ???

concerned dad
04-06-2009, 07:03 PM
Hi...

I know. My site is woefully out of date. I've been laid off (starting next Monday), so I'm hoping to get a comprehensive update complete. The chart was from a paper by Stuart Weinstein. Here's a copy:

http://www.scoliosis-australia.org/images/doc_table.gif

--Linda

Sorry to hear of the lay off. These are tough times indeed.

That table wasnt the one I recalled seeing on your site. There was a link to a discussion about progression in adulthood. You know, something like "40 degree curves were found to progress an average of 1 degree a year (or decade, or something like that).

always smilin'
04-06-2009, 08:58 PM
Interesting that I'm probably one of their case studies (Twin Cities)...my revision is scheduled for later this month. My doc from the cities (not the one doing my revision) thought I was 1 in a million with the curvature progression - however, looking at this site and reading for years, I'm not sure I'd agree with that analysis.

LindaRacine
04-07-2009, 12:09 AM
Sorry to hear of the lay off. These are tough times indeed.

That table wasnt the one I recalled seeing on your site. There was a link to a discussion about progression in adulthood. You know, something like "40 degree curves were found to progress an average of 1 degree a year (or decade, or something like that).

I don't recall ever seeing a chart about risk of progression into adulthood, but I'm getting old and senile. ;-) It is something I've discussed with a lot of different surgeons, and I think most of them have told me that when one reaches skeletal mature at 50 degrees, the risk of progression is high and at 30 degrees, the risk of progression is low.

As far as I'm concerned, this is one of the most important questions in terms of scoliosis research, that has yet to be answered fully. The only studies that have come close, are those authored by Alf Nachemson and Aina Danielsson. Because of different government conditions in Sweden, it's much easier to track patients for long periods of time. (The problem in the U.S., is that it has traditionlly been very hard to find patients for followup.) The Swedes have a cohort of 283 patients who were followed for at least 20 years after treatment ceased. It's not a perfect study, but it's been very helpful in terms of guiding treatment over the past 8-9 years.

I believe there is now a multi-center study group, funded by the SRS, with a large cohort that can hopefully be used to answer the question more definitively.

Regards,
Linda

P.S. Thanks for your concern about the job. I think I'll be OK. :)

Dingo
04-07-2009, 08:42 AM
Pooka1

Exactly. Thus we don't know if bracing works. That's where the literature has left us.

Scientists need to put a computer chip on braces to test if children are using them properly or at all. A study under those conditions would be definitive.

If children are using them properly and they don't work it would be the end of the line for bracing. And of course the opposite might prove to be true.

Pooka1
04-07-2009, 08:46 AM
Pooka1

Exactly. Thus we don't know if bracing works. That's where the literature has left us.

Scientists need to put a computer chip on braces to test if children are using them properly or at all. A study under those conditions would be definitive.

If children are using them properly and they don't work it would be the end of the line for bracing. And of course the opposite might prove to be true.

Yes. But until they do that study with controls, we can't TODAY say that bracing works. There is simply no good evidence for the claim.

LindaRacine
04-07-2009, 12:34 PM
Scientists need to put a computer chip on braces to test if children are using them properly or at all. A study under those conditions would be definitive.

If children are using them properly and they don't work it would be the end of the line for bracing. And of course the opposite might prove to be true.

Been there, done that. :)

http://www.nemours.org/research/biomedical/center/cord/lab/engineering/scoliosis.html
http://www.ncbi.nlm.nih.gov/pubmed/15958887

Dingo
04-07-2009, 04:25 PM
LindaRacine

Right on Linda! I guess we've got a definitive answer.

In the group that had high compliance 1 of the 9 subjects progressed.
In the group that had low compliance 14 of the 25 subjects progressed.

Results indicate that the more patients comply with brace treatment, the better their chances of a favorable outcome.

Pooka1
04-07-2009, 06:32 PM
LindaRacine

Right on Linda! I guess we've got a definitive answer.

In the group that had high compliance 1 of the 9 subjects progressed.
In the group that had low compliance 14 of the 25 subjects progressed.

Results indicate that the more patients comply with brace treatment, the better their chances of a favorable outcome.

Even assuming that is a definitive answer (and we can't assume that at this point), braces don't correct a curve. They can only hold a curve (if they even do that).

And then there is the issue of what is worse, wearing a Boston brace for 23 hours a day for a few years or fusion surgery. Fusion surgery is arguably easier than that and very likely has a better outcome and track record. At least for most kids.

And then there is the issue of progression through life necessitating later, more difficult, surgery. Also, there is some indication that simply having unfused scoliosis for years and years predisposes folks to other back problems. Most fused kids don't have that in their future.

For these reasons, I predict they will lower the surgery trigger in the next 10 years to at least 40*.

concerned dad
04-07-2009, 06:42 PM
Not sure it's as easy as that Dingo but it sure sounds good.
Below is from their discussion. Table 1 is attached.

This paper correlates curve progression to compliance during brace wear. Data were divided into two groups, a group whose curves did not progress more than 5 degrees between initial and final brace use and another group whose curves progressed more than 5 degrees. The compliance rate of the group whose curves did not progress was 85 +/- 18.5%; that of the group whose curves progressed was 62% +/- 24.3% (Fig. 1).

It is interesting to note that they used the Wilmington brace and the prescribed brace wearing time was
Prescribed regimens for the bracewearing schedule were 8 (nighttime) or 12 hours per day in the brace for patients with curves 30 degrees or less and 16, 20, or 23 hours per day for those with curves greater than 30 degrees.

And of course, by asking if bracing "works", here they are looking to see if there is less than 5 degrees of progression, not if there is ultimately surgery.

Anyway, interesting paper, how'd we miss this before? I would have been all over this in the "does bracing work" thread.

concerned dad
04-07-2009, 07:56 PM
I dont have much time to comment but I want to suggest that since the curves less than 30 degrees are the least likely to progress, along with the fact that they were prescribed easier bracing requirements (night 8 hrs), maybe that alone accounts for the high compliance and low progression.

In other words, if they had to wear the brace 23 hours, perhaps more would be classified as non compliant yet still those 30 degree curves wouldnt progress.

Or in other words, perhaps kids who are braced only 8 hrs a nite are more compliant. You load that compliant group with curves less than 30 degrees, and bingo, it's the 1995 Nachemson study all over again.

I dont know, I'm having a hard time putting my thoughts into words. It's hard to keep up with my new syrian drinking buddy.
:eek:

Pooka1
04-07-2009, 08:55 PM
(snip)I dont know, I'm having a hard time putting my thoughts into words. It's hard to keep up with my new syrian drinking buddy.
:eek:

:D

Is he a hairy devil and cute as a button?

:D

Dingo
04-07-2009, 09:56 PM
concerned dad

I dont have much time to comment but I want to suggest that since the curves less than 30 degrees are the least likely to progress, along with the fact that they were prescribed easier bracing requirements (night 8 hrs), maybe that alone accounts for the high compliance and low progression.

I don't know the specifics of the study but you might have a point. If they didn't compare apples with apples they need to update that and run the study again.

Even so this study is a huge step in the right direction. Without a computer chip there is no way to know what is going on.

Dingo
04-08-2009, 08:46 AM
Another thing this study suggests is that there are probably a lot of noncompliant kids populating studies on bracing. :eek:

concerned dad
04-08-2009, 09:19 AM
Yes. The Braist study is employing some kind of compliance monitor.

Pooka1
04-08-2009, 12:35 PM
Another thing this study suggests is that there are probably a lot of noncompliant kids populating studies on bracing. :eek:

That right there is an important result.

Sometimes the "cure" is worse than the "disease."