New Here, Facing Long Fusion

[Pooka1]

There was someone on the scoliosis support forum who talked about her curve "traveling up her back." So, when they fused her in the mid-thoracic spine, she developed a curve in the upper thoracic spine. And, when they fused that, she developed on in her cervical spine.

I don't think she was talking about PJK, but I can't be certain.

That sounds weird. Maybe Linda can comment.

If she had a second T fusion above a T fusion then I think the top curve was structural and should have been fused also or the lower T curve should have been fused earlier to avoid the second T curve from changing from compensatory to structural at some point.

As I mentioned, fusing T curves can and does decrease compensatory L curves. Hey talks about this in additon to a case where a compensatory L curve "collapsed" associated with an untreated structural T curve IIRC. I don't know if a T fusion can ever increase a compensatory L curve.

I assume fusing an L curve decreases compensatory T curves but I don't know that.

I have also read a testimonial about a kid with two T curves and they only fused the larger one but the smaller one above it continued to progress. That seems to suggest both curves were structural and should have been fused. Maybe they were taking a known risk by not fusing both and were playing some odds. In any case, it wasn't a newly developed curve which is what I think is being discussed here.

This issue of apparent conversion of compensatory curves to structural ones if you don't trat the structural ones I think can account for at least some of the longer fusions in certain adults. It just seems from reading the testimonials that the length of these fusions suggests a much higher incidence of double major curves in that middle aged population than occur in teh adolecent population. In that case, sinlge T curves or L curves become double majors at some rate if not fused. I think Linda mentioned that compensatory L curves for even moderate T curves become symptomatic at an alarming rate. So even if they don't progress, if there is pain then that is a problem for people with T curves in the sub-surgical range.

So the bottom line question is... while unfused structural curves can be expected to increase above or below a fused section, do compensatory or de novo curves ever form/increase above or below a fusion? I haven't heard anything about that. Linda might know.

[Mojo's Mom]

This thread got WAY off topic, but it's all interesting reading, nonetheless.

I wanted to add to the current discussion that as a child I was told I had a thoracic curve with a compensatory lumbar curve. Now, as an adult with progression, the three spine specialists I've seen over the last 9 years consider my lower curve the primary structural curve with the thoracic being the compensatory. And it was the lumbar curve that progressed very rapidly in my adolescence when they thought I'd stopped growing and lowered my brace time to night time instead of all day and night. Of course, I also shot up another 3 inches and didn't stop growing until I was 17. But I guess as I presented at ages 8 through 12, my major curve was the thoracic.

I have never had bending series X-rays, so it will be interesting to see what those show when I get them in October with the surgeon consult.

[Mojo's Mom]

I doubt if this is interesting to anyone but me, but I just found my mother's old notes on my health care and I see I was actually diagnosed at age 7, in 1965.

They must have taken a wait and see approach initially, because now I see I didn't get the first brace until a year and a half later. I wore that sucker 24 hours a day for the next 5 years, then was allowed out of it for 8 hours each day for a short time. I see that after 6 months they added a lumbar pad to the brace, which indicates to me that the doctor was concerned about the stability of what he viewed as the compensatory curve. And then I see that 5 months later, just days before I started my first year in high school, I was required to wear the brace 24 hours a day again, and I remember it was because of the lumbar curve primarily.

The notes end there, but I know that within at most a year I was out of it for much of the day again. But this shows what happened to my "compensatory curve".

[Ballet Mom]

Hi Stephanie,

Yes, somehow we always seem to get off track around here!

You have really done exceptionally well for a young juvenile scoli patient! I personally think you, your parents and your doctors are to be congratulated to have beaten that scoli back for so many years! Kudos to you.

My daughter's orthopedists have never paid much attention to my daughter's lower compensatory curve...but at my last visit with her orthotist a couple of weeks ago the orthotist said her compensatory curve looked really good. He said that was a very good thing because he had been quite concerned that her compensatory curve would take off also. It must be quite a common thing to have happen during the growth spurt.

[Ballet Mom]

There was someone on the scoliosis support forum who talked about her curve "traveling up her back." So, when they fused her in the mid-thoracic spine, she developed a curve in the upper thoracic spine. And, when they fused that, she developed on in her cervical spine.

I don't think she was talking about PJK, but I can't be certain.

Sheesh, that has to really suck...pardon my French.

[Ballet Mom]

In any case, it wasn't a newly developed curve which is what I think is being discussed here.

Actually, I was speaking of progression in the most general sense. i.e., something everyone has a risk for as they age, no matter the cause (including post-fusion patients).

(I am aware that someone would have to actually develop a curve to have it progress whatever the cause).

[Pooka1]

This thread got WAY off topic, but it's all interesting reading, nonetheless.

I wanted to add to the current discussion that as a child I was told I had a thoracic curve with a compensatory lumbar curve. Now, as an adult with progression, the three spine specialists I've seen over the last 9 years consider my lower curve the primary structural curve with the thoracic being the compensatory. And it was the lumbar curve that progressed very rapidly in my adolescence when they thought I'd stopped growing and lowered my brace time to night time instead of all day and night. Of course, I also shot up another 3 inches and didn't stop growing until I was 17. But I guess as I presented at ages 8 through 12, my major curve was the thoracic.

I have never had bending series X-rays, so it will be interesting to see what those show when I get them in October with the surgeon consult.

Linda recently mentioned a large rate of folks with untreated thoracic curves that developed symptomatic lumbar curves. And it seems from the testimonials about long fusions that untreated single curves can become double majors over time. But all that said, I am guessing it is unusual for a compensatory lumbar curve to become not only structural but the larger curve.

Have any of your surgeons commented on the frequency of that? Are they shocked?

[Pooka1]

The notes end there, but I know that within at most a year I was out of it for much of the day again. But this shows what happened to my "compensatory curve".

Just from the testimonials on untreated curves, it seems that compensatory curves do become structural in some folks or at least symptomatic. I didn't realize that until recently. If it is the majority then I predict they will eventually lower the surgery trigger angle from 50* down to something else.

[Mojo's Mom]

Linda recently mentioned a large rate of folks with untreated thoracic curves that developed symptomatic lumbar curves. And it seems from the testimonials about long fusions that untreated single curves can become double majors over time. But all that said, I am guessing it is unusual for a compensatory lumbar curve to become not only structural but the larger curve.

Have any of your surgeons commented on the frequency of that? Are they shocked?

They might comment if they knew it, but I doubt that I've really gotten into these kinds of details about my past with anybody. I didn't see an orthopedist at all for 25 years, and I no longer had x-rays from my childhood treatment, or doctor's notes. And for the first 4 years of adult x-rays, I was told my curves weren't progressing and might stay stable into the future. That's all I heard, and all I wanted to hear, and I didn't ask any detailed questions. It wasn't until recently that I understood that I now have progressing double major curves as opposed to what I remember being told in childhood. I've spent most of the last 10 years in serious denial, and I'm only taking a technical interest in my curvature now.

When I see the serious surgeon on October 1st, I will mention the apparent change in status of my lumbar curve and ask your question.

[Pooka1]

They might comment if they knew it, but I doubt that I've really gotten into these kinds of details about my past with anybody. I didn't see an orthopedist at all for 25 years, and I no longer had x-rays from my childhood treatment, or doctor's notes. And for the first 4 years of adult x-rays, I was told my curves weren't progressing and might stay stable into the future. That's all I heard, and all I wanted to hear, and I didn't ask any detailed questions. It wasn't until recently that I understood that I now have progressing double major curves as opposed to what I remember being told in childhood. I've spent most of the last 10 years in serious denial, and I'm only taking a technical interest in my curvature now.

When I see the serious surgeon on October 1st, I will mention the apparent change in status of my lumbar curve and ask your question.

Thanks and good luck!

I can only think of one testimonial where a compensatory lumbar essentially "collapsed" under a sub-surgical thoracic curve in a young adult. That might be analogous to your situation wherein it sounds like your sub-surgical thoracic curve became a progressive double major.

Here's the blog entry:

http://drlloydhey.blogspot.com/2007/...scoliosis.html

In that case, her thoracic curve did stay stable at 30* but the lumbar took off. Linda mentioned they are seeing a lot of this. I don't think pediatric surgeons are telling parents of kids with 30* thoracic curves at maturity that they might run into this.

I just think your surgeon's comments would be valuable information for the other players in this sandbox which ever way it goes. Either that is very unusual or is not so unusual. I am coming to see the large disconnect between what pediatric surgeons are telling parents and what is happening in the out years. I don't think there are much data to support certain paradigms out there.

[Ballet Mom]

Thanks and good luck!

I can only think of one testimonial where a compensatory lumbar essentially "collapsed" under a sub-surgical thoracic curve in a young adult. That might be analogous to your situation wherein it sounds like your sub-surgical thoracic curve became a progressive double major.

Here's the blog entry:

http://drlloydhey.blogspot.com/2007/...scoliosis.html

In that case, her thoracic curve did stay stable at 30* but the lumbar took off. Linda mentioned they are seeing a lot of this. I don't think pediatric surgeons are telling parents of kids with 30* thoracic curves at maturity that they might run into this.

I just think your surgeon's comments would be valuable information for the other players in this sandbox which ever way it goes. Either that is very unusual or is not so unusual. I am coming to see the large disconnect between what pediatric surgeons are telling parents and what is happening in the out years. I don't think there are much data to support certain paradigms out there.

I think the key is that these surgeons seemed in the past to send patients away for the rest of their lives at maturity. It seems apparent to me that monitoring over the adult years is essential to catch problems before they become huge during adulthood. I think they do try to monitor people with scoliosis as adults nowadays. I don't think the answer is scoliosis surgeries need to be performed at thirty degrees.

[Pooka1]

I don't think the answer is scoliosis surgeries need to be performed at thirty degrees.

Well let's hope that's not the answer. But maybe something can and should be done about the large numbers of symptomatic lumbar curves under sub-surgical thoracic curves that Linda mentioned.

[Ballet Mom]

Well let's hope that's not the answer. But maybe something can and should be done about the large numbers of symptomatic lumbar curves under sub-surgical thoracic curves that Linda mentioned.

Can you find the quote from Linda you're talking about? I'm not sure what that is regarding. Thanks.

[Pooka1]

http://www.scoliosis.org/forum/showp...3&postcount=25

[Ballet Mom]

http://www.scoliosis.org/forum/showp...3&postcount=25

Ahh, thanks. I took that comment to mean kids with large thoracic curves already past the size where surgery is indicated. Not fusing ever smaller curves.