New Here, Facing Long Fusion

[Ballet Mom]

Jess,
Ironically, my parents always told me how "lucky" I was to have avoided surgery. My father was terribly concerned about my having a long scar on my back, but apparently he never saw the internal scars from the 9 years of wearing the Milwaukee brace. He didn't live to see my back fall apart, either.

Looking on the bright side, you had 35 years of complete flexibility. And by avoiding surgery at that time, you may very well have avoided flatback syndrome from the Harrington Rod hardware used at that time, which is apparently no fun at all.

Perhaps when you see a different specialist, the fusion may end up not being so long. You never know. Good luck!

[jrnyc]

Steph, will you be discussing doing minimally invasive approach when you discuss surgery...?

wishing you best of luck...
jess

[Pooka1]

According to Dr. Douglas Orr , the lumbar curves are the MOST likely to progress as an adult.

I'd like to see that study. It may be true for adult onset scoliosis which was the main subject of that interview but it clearly isn't true for AIS where it has been shown that lumbar curves are less likely that thoracic curves to progress. I haven't seen this study but it was apparently so persuasive that it is viewed as negating a large controlled bracing study when it was discovered that lumbar curves were inadvertently stacked in the braced cohort. Thus they couldn't claim that bracing worked based on that stacking and the lower likelihood of progression in lumbar curves in AIS.

According to the Weinstein/Ponsetti study that followed patients after an average of forty years, only one out of thirteen patients with a lumbar curve under thirty degrees progressed, so it is not very common.

How many were lost to the study? There must have been some. The procedure as I understand it is to count those as failures. What is the full citation?

We have at least two and I think possibly three folks here with small lumbar curves who are in surgical range. This is not an accurate cross section but it might be enough to further scrutinize the literature claiming this is extremely rare although one in 13 isn't all that rare.

[Ballet Mom]

I'd like to see that study. It may be true for adult onset scoliosis which was the main subject of that interview but it clearly isn't true for AIS where it has been shown that lumbar curves are less likely that thoracic curves to progress. I haven't seen this study but it was apparently so persuasive that it is viewed as negating a large controlled bracing study when it was discovered that lumbar curves were inadvertently stacked in the braced cohort. Thus they couldn't claim that bracing worked based on that stacking and the lower likelihood of progression in lumbar curves in AIS.

I am talking about adult curves. Lumbar curves become likely to progress during adulthood at a lower Cobb angle at maturity than thoracic curves. Thoracic curves become likely to progress at a much higher cobb angle during adulthood.

Yes, lumbar curves are easier to be successfully braced during adolescence.

How many were lost to the study? There must have been some. The procedure as I understand it is to count those as failures. What is the full citation?

It's the famous Weinstein/Ponseti study that has been discussed several times in the research section of this forum.

Curve progression in idiopathic scoliosis http://www.ejbjs.org/cgi/reprint/65/4/447

We have at least two and I think possibly three folks here with small lumbar curves who are in surgical range. This is not an accurate cross section but it might be enough to further scrutinize the literature claiming this is extremely rare although one in 13 isn't all that rare.

Obviously the Weinstein/Ponseti study is lacking in large numbers for each curve group but I think it has been a very important study for orthopedists. Nevertheless, it is also not fair to state:

"I am just curious as to what your surgeons say about all this. I expect sheer shock from them. Based on my experience and that of others, I think virtually all parents have the understanding that if their kid is 25* at maturity (or actually less than 50*), they will never need fusion for progression.

Everything I read states things in generalities such as "most" or "not likely". There are no guarantees in scoliosis, just probabilities. I think they used to state that people wouldn't progress at a certain curvature, prior to the aforementioned study, because they didn't know the longer term outcomes. Now they do know that some people can continue to progress anyway for various reasons, including degeneration.

[Pooka1]

I am talking about adult curves. Lumbar curves become likely to progress during adulthood at a lower Cobb angle at maturity than thoracic curves. Thoracic curves progress become likely to progress at a much higher cobb angle during adulthood.

I think there are three issues here:

1. what does adult onset degenerative scolisois in the lumbar do in the out years?
2. what does a compensatory AIS lumbar curve do in the out years with or without fusion of a structural thoracic curve?
3. what does a structural AIS lumbar curve do in the out years?

These are distinguishable in type though maybe not average outcome.

Linda's comments were interesting because as I understood them, apparently formerly compensatory AIS lumbar curves associated with (unfused?) structural thoracic curves sometimes cause trouble in the out years. I hadn't heard that before. I added a quesiton about compensatory AIS lumbar curves associated with fused T curves.

Yes, lumbar curves are easier to be successfully braced during adolescence.

The conclusion was not that but rather that they were most likely unecessarily braced due to a lower likelihood of progression. It is a false positive result for bracing success, not a true positive like you concluded. In other words, you can't conclude that lumbars are more successfully braced when they are simply less likely to prorgess. That is what is meant by the study result being negated. You are claiming they were not negated with your comment.

It's the famous Weinstein/Ponseti study that has been discussed several times in the research section of this forum.

Curve progression in idiopathic scoliosis http://www.ejbjs.org/cgi/reprint/65/4/447

I'll look at that tonite.

[Mojo's Mom]

Looking on the bright side, you had 35 years of complete flexibility. And by avoiding surgery at that time, you may very well have avoided flatback syndrome from the Harrington Rod hardware used at that time, which is apparently no fun at all.

Perhaps when you see a different specialist, the fusion may end up not being so long. You never know. Good luck!

True, I've heard that many with Harrington rods have had to undergo revisions, and I have had many years of a "normal" body. Thanks for reminding me of that.

Steph, will you be discussing doing minimally invasive approach when you discuss surgery...?

wishing you best of luck...
jess

Absolutely, but I doubt if they can do it since I have such a big, highly rotated lumbar curve. But yes, I'll sure try for that.

According to the Weinstein/Ponsetti study that followed patients after an average of forty years, only one out of thirteen patients with a lumbar curve under thirty degrees progressed, so it is not very common.

I'm part of an exclusive club; how wonderful!

[jrnyc]

hey Steph
according to Dr Anand and another surgeon i met with, minimally invasive approach can be used for any and all curves...regardless of size or rotation...


i hope you find the best surgeon for your needs...

jess

[Mojo's Mom]

Thanks, Jess, I didn't know that. I'll look for someone who can do it, for sure. My first serious consult is October 1st, with Dr. Michael O'Brien from Baylor.

I'm not in any exclusive club, after all. My records from the '70s are finally on their way to me, and I'm told they show one or both of my curves measured at least 35 degrees at the end of my bracing. One doctor note shows 37 degrees. So this confirms for me what my own body has told me over the years, that things didn't change much until I hit 40, then began to change gradually, and now that I'm in my 50s the curves are progressing rapidly.

I am lucky, in the sense that I'm healthy, fit, have good insurance...and I never had the slightest pain until I was 35. It still sucks, though!

[jrnyc]

it sure does!

my curves didnt cause too many problems til i herniated discs, after age 50..then all heck broke loose!

hope your surgeon consults go well...

jess

[Pooka1]

I'm not in any exclusive club, after all. My records from the '70s are finally on their way to me, and I'm told they show one or both of my curves measured at least 35 degrees at the end of my bracing. One doctor note shows 37 degrees. So this confirms for me what my own body has told me over the years, that things didn't change much until I hit 40, then began to change gradually, and now that I'm in my 50s the curves are progressing rapidly.

That's really great that you were able to get your records. You're right you aren't in an exclusive club like the 2-3 other folks here with lumbar curves smaller than 30 at maturity who nevertheless are now in surgery territory.

But you are still unsual compared to what I was told and what I am guessing several other parents were told. I was under the impression that the "magic" angle to be under at maturity was 50* to avoid fusion for life. But I recently posted some work showing that 30* is probably a better threshold for sorting out who will progress to surgery territory and who won't despite the few cases which were below this angle yet still reached surgery territory.

I am lucky, in the sense that I'm healthy, fit, have good insurance...and I never had the slightest pain until I was 35. It still sucks, though!

Great points. Good luck.

[jrnyc]

what about lifestyle adding to progression...why did i progress and my sister didnt...her curve is still so small they barely bother to notice...it causes absolutely zero problem....i'd guess it is 10 degrees, and she is over age 60!

i carried a very heavy leather (Coach) bag on my right shoulder for years...i would leave home at 7 a.m. and not get back til 10 p.m....did it for years..worked full time and went to school at nite, (thru 3 grad degrees, so it was a lot of years!) then worked 2 jobs...went from one job to the next one...
friends said i "carried my life in my bag on my shoulder!" .... since i already had a curve, i am sure that didnt help! and, looking back, i realized i had a curve since teen years, or earlier!

jess

[Mojo's Mom]

It would be interesting to know if what we do in our daily lives impacts progression. My husband insists that I started getting rapidly worse after my granddaughter entered the world, since I have always been a major caregiver and have many miles of toting around the most precious little bundle in the whole world. I know I was progressing prior to that, and I think the timing is coincidental, because I've always done a lot of fairly heavy lifting, if not so regularly. But who knows?

If it's because of the baby, it's worth it, because she is worth everything to me. But I know I won't be lifting her for a very long time after surgery, when it comes.

[jrnyc]

back in the day, Steph, we didnt use back packs...so the weight of bags...for school, for anything, was always on one shoulder....and we also used to carry our books on one hip...

now they have ways to carry little babies on the chest...so the weight is evenly distributed...though i guess it doesnt work for toddlers...but anything that can evenly distribute weight is definitely the way to go!

jess

[hdugger]

But you are still unsual compared to what I was told and what I am guessing several other parents were told. I was under the impression that the "magic" angle to be under at maturity was 50* to avoid fusion for life. But I recently posted some work showing that 30* is probably a better threshold for sorting out who will progress to surgery territory and who won't despite the few cases which were below this angle yet still reached surgery territory.

Are people still being told that?

We were always told that his curve had to be under 50 or 60 degrees to avoid surgery *right now* - not that it had to stay under that to avoid surgery altogether. But, even when he was diagnosed at 35 degrees, we were told that he would likely continue to show some progression through his adult years but that they didn't expect him to progress into the surgical range. Once he reached 47 degrees, noone promised us that he could avoid surgery at all - in fact, on the contrary, they started saying things like "well, because of where his curves are, his lung function should still be pretty good up until 90 degrees "

I don't think even fused teenagers can be promised that they'll avoid surgery for life. IMO, once you're over 30 degrees and unfused, or at any degree but fused, I think you're looking at a big chance of having spinal surgery in your adult years. So, I'd almost say "Once you pass the 30 degree threshold (whether you get fused or not) you have a high chance of facing surgery/more surgery in your future."

[Ballet Mom]

Are people still being told that?

We were always told that his curve had to be under 50 or 60 degrees to avoid surgery *right now* - not that it had to stay under that to avoid surgery altogether. But, even when he was diagnosed at 35 degrees, we were told that he would likely continue to show some progression through his adult years but that they didn't expect him to progress into the surgical range. Once he reached 47 degrees, noone promised us that he could avoid surgery at all - in fact, on the contrary, they started saying things like "well, because of where his curves are, his lung function should still be pretty good up until 90 degrees "

I don't think even fused teenagers can be promised that they'll avoid surgery for life. IMO, once you're over 30 degrees and unfused, or at any degree but fused, I think you're looking at a big chance of having spinal surgery in your adult years. So, I'd almost say "Once you pass the 30 degree threshold (whether you get fused or not) you have a high chance of facing surgery/more surgery in your future."

I think it's pretty clear that anyone with scoliosis (and even those without scoliosis) have a risk of scoliosis progression as they age, including those already fused. Nothing is set in stone.

I think fifty degrees for most thoracic curves probably has something to it. Too many doctors state that, and the Weinstein/Ponseti study clearly shows the risk above fifty degrees, albeit with very low numbers of patients studied. From 30 to 50 degrees, the Weinstein/Ponseti study is pretty much mute (two data points between 30 and 35 degrees that did not progress and two data points from 40 to 50 degrees that did). They don't have the data to state anything for thoracic curves in this range due to the lack of numbers, and it's a fairly critical range. The Swedish study is showing that 35 degrees at maturity likely have very little progression at least for decades which is hopeful...that still leaves 35 to 50 degrees at maturity without data (for thoracic curves).

I think it's pretty clear from the Weinstein/Ponseti study that lumbar curves are at risk for progression in adulthood somewhere in the 35-40 degree range at maturity. But not all do progress.

It's hard for me to believe that there is so little interest in studying the long-term results of these scenarios in order to help surgeons and patients make better decisions. Maybe they just like to keep broad generalizations seeing as nothing is guaranteed anyway and it probably wouldn't change the surgery recommendations anyway.

But any doctor that is making hard and fast statements of non-progression is one I'd steer clear of. Just my humble opinion. Or at least know that the doctor is speaking in probabilities, not certainties.