Ultra Long-Term Follow-Up

[Pooka1]

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]

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.


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]

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 My site is woefully out of date.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]

Same boat

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]

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 My site is woefully out of date.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']

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]

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]

need a computer chip on braces

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]

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]

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/biom...scoliosis.html
http://www.ncbi.nlm.nih.gov/pubmed/15958887

[Dingo]

Right on!!!

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]

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]

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]

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.

[Pooka1]

(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.

Is he a hairy devil and cute as a button?