Hypokyphosis

[rohrer01]

Hello,

I just wanted to pipe in here on a few things. I am a grown woman with an upper Left T-curve. I went mostly through my childhood without being diagnosed. I was diagnosed at 16 with AIS, although I'm not convinced that it really isn't JIS, since I've had back pain since age 8 and could feel the deformity by age 12. I have severe hypokyphosis and have never been braced. So hypokyphosis often goes with the territory of thoracic curves. I also had late menarche at nearly 15 years of age. I have always had very low BMI, ate like a monster when I was a kid. I was super flexible, although never in ballet, I could do a back bend and grab my ankles into my early 20's AND put both feet behind my head (hamstrings were always tight, though). Band was my thing. :-) My curves remained pretty much stable from 16 until I turned 40. Now they are on the move again. As far as my growth, at 15 I was 5' 8-1/4" and at 16 I was 5' 7-1/2". I have pretty much stayed there, except for at my last scoli check with the surgeon I was, I believe, 5' 7". So I would say my growth stopped about a year and a half after menarche. I'm telling you this because perhaps you can use my information as another tool to help you decipher some of this stuff about growth, flexibility, low BMI, and late menarche. I have strong bones, however, and have only broken 'maybe' two in my lifetime. I never went to the doc when I think I broke my tailbone. I broke a finger a few years ago, but who's finger wouldn't break getting slammed in a heavy metal door? LOL Of course, it wasn't funny at the time.

Another peice to the growth puzzle is that my daughter has mild AIS (not sure if it's JIS because she wasn't diagnosed until age 11). Stupidly I never followed up with her past age 12 because a general ortho said she was about done growing and didn't need any follow-up. ARGH!!! My daughter has been about 5' 4" for a very long time. Since she had her baby at age 18, she's grown at least another 1/2". She's 22 now, and I believe she's done. She measured 5' 5-1/2" at the doc the other day, but that was with her shoes on. So, yes, late growth IS possible. She was also low BMI but not late menarche as she had just turned 13.

My youngest son also had JIS. He was diagnosed at about age 8 with a very mild curve. By age 14 his curve was GONE. We didn't do a thing. He's as straight as an arrow. However he does have some vertebrae with spina bifida occulta, the same as me. I realize that boys are a whole different ballgame. They are late growers. My 24 year old son is still growing! He's the only one with no back problems that I'm aware of.

I hope this info was at least a little informative, if nothing else. My advice is don't do what I did. Follow your daughter closely. I didn't have access to a scoli doc for my kids, or wasn't aware that I could have access to one (I didn't have access to the www). Fortunately, everything turned out fine. My daughter will take herself to the doc when she's hurting bad enough. I've educated them all on this condition and they are adults now so it's out of my hands.

Regards,
Rohrer01

[Pooka1]

I guess he's just using her x-rays as evidence. He is using my daughter as kind of a case study. They don't offer the LA brace here or any brace like it. If he likes the results, he is going to have the orthotist learn how to make this type of brace. That won't happen in my daughter's brace-life, though. Until now, I really thought it was the brace, too, but now I'm wondering about the JIS.

Look, I would like to make it abundantly clear that there is not enough data to rule anything in or out at this point. All we have are artifact-ridden anecdotes. That includes the surgeon unless he did a high quality controlled study.

This is a very variable condition.

In your daughter's case, her reduction could be the brace alone, the JIS alone, or some combination of the two. For the next JIS kid, it could be the brace alone, the JIS or some combination of the two NOT necessarily the same as your daughter. There are known unknowns and unknown unknowns. We have Katz et al. (2010) claiming amount of correction in brace did NOT correlate with success. It is very clear that we have not even identified the master variables most likely.

In my LAY opinion, given the ANECDOTES on the group, there is MORE evidence for the JIS explanation than the LA Brace explanation but I could be (read: likely) completely wrong. Not my field nor is it the surgeon's field to the extent he only has his uncontrolled observations which can't in principle separate unnecessary bracing from successful bracing. But in the unusual case of reductions, that in my opinion is much more likely to be due to the treatment rather than natural history for curves >30*.

And finally, from the LA Brace results page...

http://thelabrace.com/result.php

* Note - we do not normally recommend or suggest The LA Brace for curves over 45 degrees. The 3 cases mentioned here with curves of 50+ degrees we advised against bracing but were pressed to try The LA Brace by the patients/families. The preliminary results stated here are encouraging but the final outcomes of bracing are not normally considered until at least 2 years post discharge from brace treatment.

I have seen data showing the need to wait at least 2 years after last taking off the brace but I slightly doubt many of those kids started at -7* from the highest curve. Who knows. There is a reason your surgeon was surprised at the -7* out of brace... he can't have seen that very often.

[scolio1964]

Hello,

I just wanted to pipe in here on a few things. I am a grown woman with an upper Left T-curve. I went mostly through my childhood without being diagnosed. I was diagnosed at 16 with AIS, although I'm not convinced that it really isn't JIS, since I've had back pain since age 8 and could feel the deformity by age 12. I have severe hypokyphosis and have never been braced. So hypokyphosis often goes with the territory of thoracic curves. I also had late menarche at nearly 15 years of age. I have always had very low BMI, ate like a monster when I was a kid. I was super flexible, although never in ballet, I could do a back bend and grab my ankles into my early 20's AND put both feet behind my head (hamstrings were always tight, though). Band was my thing. :-) My curves remained pretty much stable from 16 until I turned 40. Now they are on the move again. As far as my growth, at 15 I was 5' 8-1/4" and at 16 I was 5' 7-1/2". I have pretty much stayed there, except for at my last scoli check with the surgeon I was, I believe, 5' 7". So I would say my growth stopped about a year and a half after menarche. I'm telling you this because perhaps you can use my information as another tool to help you decipher some of this stuff about growth, flexibility, low BMI, and late menarche. I have strong bones, however, and have only broken 'maybe' two in my lifetime. I never went to the doc when I think I broke my tailbone. I broke a finger a few years ago, but who's finger wouldn't break getting slammed in a heavy metal door? LOL Of course, it wasn't funny at the time.

Another peice to the growth puzzle is that my daughter has mild AIS (not sure if it's JIS because she wasn't diagnosed until age 11). Stupidly I never followed up with her past age 12 because a general ortho said she was about done growing and didn't need any follow-up. ARGH!!! My daughter has been about 5' 4" for a very long time. Since she had her baby at age 18, she's grown at least another 1/2". She's 22 now, and I believe she's done. She measured 5' 5-1/2" at the doc the other day, but that was with her shoes on. So, yes, late growth IS possible. She was also low BMI but not late menarche as she had just turned 13.

My youngest son also had JIS. He was diagnosed at about age 8 with a very mild curve. By age 14 his curve was GONE. We didn't do a thing. He's as straight as an arrow. However he does have some vertebrae with spina bifida occulta, the same as me. I realize that boys are a whole different ballgame. They are late growers. My 24 year old son is still growing! He's the only one with no back problems that I'm aware of.

I hope this info was at least a little informative, if nothing else. My advice is don't do what I did. Follow your daughter closely. I didn't have access to a scoli doc for my kids, or wasn't aware that I could have access to one (I didn't have access to the www). Fortunately, everything turned out fine. My daughter will take herself to the doc when she's hurting bad enough. I've educated them all on this condition and they are adults now so it's out of my hands.

Regards,
Rohrer01

Thanks for this. Your story is very interesting and it is helpful. One thing I've learned through all of this is that everyone is different. I was a late grower and a slow grower. I don't think I ever had a big growth spurt as a kid. The same kind of thing is happening with my daughter. I think that being a late grower and a slow grower is a frustrating thing though!!

I'm glad that you shared your story and I will take your advice and keep following my daughter closely.

Thanks!!

[scolio1964]

Look, I would like to make it abundantly clear that there is not enough data to rule anything in or out at this point. All we have are artifact-ridden anecdotes. That includes the surgeon unless he did a high quality controlled study.

This is a very variable condition.

In your daughter's case, her reduction could be the brace alone, the JIS alone, or some combination of the two. For the next JIS kid, it could be the brace alone, the JIS or some combination of the two NOT necessarily the same as your daughter. There are known unknowns and unknown unknowns. We have Katz et al. (2010) claiming amount of correction in brace did NOT correlate with success. It is very clear that we have not even identified the master variables most likely.

In my LAY opinion, given the ANECDOTES on the group, there is MORE evidence for the JIS explanation than the LA Brace explanation but I could be (read: likely) completely wrong. Not my field nor is it the surgeon's field to the extent he only has his uncontrolled observations which can't in principle separate unnecessary bracing from successful bracing. But in the unusual case of reductions, that in my opinion is much more likely to be due to the treatment rather than natural history for curves >30*.

And finally, from the LA Brace results page...

http://thelabrace.com/result.php



I have seen data showing the need to wait at least 2 years after last taking off the brace but I slightly doubt many of those kids started at -7* from the highest curve. Who knows. There is a reason your surgeon was surprised at the -7* out of brace... he can't have seen that very often.

I get what you're saying. If my daughter gets through this without needing surgery, we won't know if it's because of the brace or not. I understand that. You've just brought up the JIS and I hadn't thought of that before. It's just more for me to think about. I want to have as much information as I can. When she was first diagnosed, I thought I knew about scoliosis because I had it, but I've learned so much more since she started to progress and I've had to look at alternative treatments. I appreciate your opinions.

[mariaf]

I think it is rare too, but my daughter's growth has been delayed almost all of her life, so it really wouldn't surprise me if she grew until then. I hope not for her sake. That would mean she would be wearing a brace for 10 years.

Then it sounds like she could be the exception to the rule and grow a few years past when most girls stop growing. There is always the 'norm' and then the exceptions on both ends of the spectrum. My son is also considered a late bloomer - his bone age is 1-2 years behind his actual age - and I'm not sure if it is connected, but he even lost his baby teeth later than most.

[Pooka1]

I get what you're saying. If my daughter gets through this without needing surgery, we won't know if it's because of the brace or not. I understand that. You've just brought up the JIS and I hadn't thought of that before. It's just more for me to think about. I want to have as much information as I can. When she was first diagnosed, I thought I knew about scoliosis because I had it, but I've learned so much more since she started to progress and I've had to look at alternative treatments. I appreciate your opinions.

I wasn't quite clear. I do think the reduction was due to the brace and not the natural history of some JIS curves self correcting. I think 40* is probably outside the range where JIS curves self correct but I don't know that.

What I was trying to get at is that I think any brace would have produced that reduction in that JIS case and that no brace could have produced that reduction in any AIS case.

The issue is reduction due to JIS + (any) brace versus no reduction in AIS + (any) brace.

That suggestion is in line with the data in hand as far as I know.

[mariaf]

I agree with Sharon that most of the time, if a curve responds favorably to one type of brace, it would in all likelihood respond similarly to any well-made brace. To take that a step further, the same is also true, IMHO, to some extent with regard to bracing vs. VBS - meaning that curves that respond well to bracing will respond well to VBS; whereas a rigid, aggressive curve will likely respond to neither. I am not saying this is true in all cases - and this is of course, just my opinion - but I'm basing it on the dozens (maybe hundreds) of children I have followed over the past several years on various scoli sites and elsewhere.

[Pooka1]

Yes I agree with Maria.

The Cheneau and Luke Stikeleather, and the Cheneau's alter ego, the LA Brace, have been around long enough to have changed the landscape if they were changing the landscape. But we don't obtain that result. Claims aside, there remains nothing in the literature that I can find to suggest these braces and this orthotist have a better track record than any other brace. Stikeleather seems to have an almost religious following all based on faith without evidence. The orthotist I worked with claimed only 2 patients of about 300 went on to need surgery. Maybe all orthotists are equally out of the data loop.

The Katz et al. (2010) article really makes clear that all of these things that appear to correlate with bracing success are just noise. I think the individual outcomes in Katz and every other article could be largely predicted ahead of time for at least 75% of the kids just by knowing the scoliosis.

The time has passed where any brace or PT study is publishable without having the Scoliscores. There is enough nonsense in that literature to be larding it up with more.