new to boards lots of questions :)

[king14]

Hi fellow socli's. I've been lurking for oh, 10 years while I did altenative methods for my scoliosis. It was 30 thoracic, 40 lumbar in my early 20's I'm now 29. I was told it wouldn't get worse since I was an adult. well it hasn't bothered me at all, until about 3 months ago, my low back starting hurting. I took it easy working out, and then just about a month a go, the pain got so bad I was sent for an MRI I have 3 bulding discs L2-S1. Nerve pain, can't cough, sit, sneeze without crying. And my curves have worsened to 40T 48L. Most upsetting is i lost 2.5 inches in about 6 years. I know my curves aren't "technically" surgical degrees, but I made an appt to see one anyway.
Questions:

1.I know that its not that bad yet, but, is there such a thing as "do it now, while you're young, strong, and still have a flexible spine? Or wait to be in more pain?
2. I want kids and I know sometimes it gets worse with pregnancy as well. and that scares me! Did this happen to you?
3. Can the rotation and curvature be what is causing the bulge?
4. I was told that my Thoracic is structural and my lumbar is compensatory, and that I can bend (i did those bending xrays) to basically a "straight" spine. hot yoga anyway. I know that its up to the surgeon but do leave the "compensatory curve" not fused on adults too?

Thanks in advance!

[Pooka1]

And my curves have worsened to 40T 48L.

4. I was told that my Thoracic is structural and my lumbar is compensatory, and that I can bend (i did those bending xrays) to basically a "straight" spine. hot yoga anyway. I know that its up to the surgeon but do leave the "compensatory curve" not fused on adults too?

Hi and welcome. I am a parent of two patients and not a patient so I won't address the first three questions. I am sure others will though so no loss. :-)

If you look at the Lenke classification system of curves, it states categorically that the larger curve is always structural. That would be your lumbar unless you mixed the numbers up. I can tell you I have never seen another case posted to this forum where the smaller curve was structural and the larger one was compensatory.

Did you straighten your lumbar on bending? If so, you need to be written up as a case that violates Lenke's classification system.

I wonder if it is possible your previously compensatory lumbar collapsed under the structural thoracic curve and might not have become structuralized yet. If so and if it were me, I would get the thoracic curve fused YESTERDAY to hopefully avoid fusion into the lumbar.

To answer your question, I do not think surgeons ever fuse compensatory curves in adults, in kids, in boxes, with foxes, on trains, in the rain, etc. etc. etc. That would be insane.

Good luck.

[Marina63]

Pregnancy

Hi!
I can definitely say that pregnancy can worsen scoliosis. I went from prepregnancy curve of about 35º (I was 29 years old) to 61º at age 48. Everyone is different.
Good luck!

[king14]

Thank you Pooka1!
I will let you know if I am "special" Thursday when I meet with the scoliosis surgeon, This was a reading from an Ortho Surgeon, but one that does not specialize is scoliosis surgery.
Lots of tests, in the last couple of months, and different opinions, I may have messed it up. But I do know that the thoracic is the smaller of the two. And I do know that my back is SUPER flexible, and was told my bending ability was as flexible as a young kid... So we'll see what Dr.Akbarnia says. thank you, and I'll keep you posted.

[Pooka1]

Thank you Pooka1!
I will let you know if I am "special" Thursday when I meet with the scoliosis surgeon, This was a reading from an Ortho Surgeon, but one that does not specialize is scoliosis surgery.
Lots of tests, in the last couple of months, and different opinions, I may have messed it up. But I do know that the thoracic is the smaller of the two. And I do know that my back is SUPER flexible, and was told my bending ability was as flexible as a young kid... So we'll see what Dr.Akbarnia says. thank you, and I'll keep you posted.

Well if you are a special case then I would like to be the first to get your autograph. That would be amazing if you were. I am hoping for that. :-)

Good luck!

[Pooka1]

By the way, if you can straighten out both curves some certain percent then you don't have structural curves. Did you straighten both curves out mostly?

[rohrer01]

Hi fellow socli's. I've been lurking for oh, 10 years while I did altenative methods for my scoliosis. It was 30 thoracic, 40 lumbar in my early 20's I'm now 29. I was told it wouldn't get worse since I was an adult. well it hasn't bothered me at all, until about 3 months ago, my low back starting hurting. I took it easy working out, and then just about a month a go, the pain got so bad I was sent for an MRI I have 3 bulding discs L2-S1. Nerve pain, can't cough, sit, sneeze without crying. And my curves have worsened to 40T 48L. Most upsetting is i lost 2.5 inches in about 6 years. I know my curves aren't "technically" surgical degrees, but I made an appt to see one anyway.
Questions:

1.I know that its not that bad yet, but, is there such a thing as "do it now, while you're young, strong, and still have a flexible spine? Or wait to be in more pain?
2. I want kids and I know sometimes it gets worse with pregnancy as well. and that scares me! Did this happen to you?
3. Can the rotation and curvature be what is causing the bulge?
4. I was told that my Thoracic is structural and my lumbar is compensatory, and that I can bend (i did those bending xrays) to basically a "straight" spine. hot yoga anyway. I know that its up to the surgeon but do leave the "compensatory curve" not fused on adults too?

Thanks in advance!

King14, Welcome.
A lurker has come to join us! Yay! I mean that. It's nice to share info back and forth. As for the pregnancy thing, my husband and I miscarried when I was 35 two times 36 once and 38 once, and after that it became like an obsession of mine to have a baby. I went through fertility treatments with no success. Then I went to my scoli doc for my 5 year check-up (41 y/o) and found out my scoli had progressed after over 20 years of being stable. I have pain so am on a lot of meds. I talked to my ob/gyn and asked about pregnancy and her advice at my age would be to have a baby THEN have surgery IF I'm going to have the back surgery. I haven't seen the scoli doc about it or asked about it because he said I was in the grey surgical area and there was some confusion with him the last time I saw him. So I'm really in the same dilemma. IF I get pregnant, I will have to put off surgery at all costs until my child would be old enough to be self sufficient AND mature enough to understand what was going on. In my opinion, I would want to wait until they were at least 7 or 8 years old if I could. I'm still progressing, but more slowly now.

As for you, you are young. There are people on here that are young, have surgery, and get pregnant right away and do just fine. I would ask your ob/gyn about it. There are a couple of posters on here just recently talking about their pregnancies. You might want to talk to them and see what their experiences are like. There are also some people on here having surgery that have very small children. It's been really tough on them and they've received a lot of support from friends and family. It's a tough call. We all know that fertility goes down drastically when a woman hits 40, but steadily declines in the 30's. So depending on how your biological clock is working, time is of the essence (in my opinion) for having children. My best advice would be to ask your doctor's (both ob/gyn and scoli surgeon). I can't imagine going through a pregnancy with your back already hurting the way it is. I've had three kids and my scoli is all thoracic and I had some pretty bad lower back pain in the third trimester. It goes with the territory of being preggo.

Best wishes to you. I sincerely hope you find the answers you are looking for.

Rohrer01

[king14]

By the way, if you can straighten out both curves some certain percent then you don't have structural curves. Did you straighten both curves out mostly?

Well my films have all been sent to the Dr. So i'm just speaking off of memory, but I do know that I only straighten completely out to thet left. My thoracic really doesn't change, so that would be my structural.... right?

I also know that MRI shows lumbar curve at 32, standing xray shows it at 48, so I do know that it changes weight bearing. I don't understand how it changes that much being as i'm 5'8 and 130? It's not like i'm over weight.... this appt will be interesting....

[Confusedmom]

Welcome! Good advice here. Yes, surgeons often recommend getting it taken care of while you're young, healthy, flexible, etc. Yes, it can get worse with pregnancy. Mine did with my second child only. Yes, Pooka, they DO sometimes fuse compensatory curves. Depends on the situation. I had such a large major they worried if they straightened it alone my left shoulder would stick out (I didn't completely understand, but I followed their advice). Pain can sometimes lessen with pregnancy hormones. It did for me. But then I was in physical therapy for back pain when my babies were 6 months old. I was recommended to have surgery at age 30 (pre-kids), but waited until 40, when my youngest is now 5. During that time my curve went from 55 degrees to 80 degrees. I would still do it the same way, though. Best of luck!

Evelyn

[Pooka1]

Well my films have all been sent to the Dr. So i'm just speaking off of memory, but I do know that I only straighten completely out to thet left. My thoracic really doesn't change, so that would be my structural.... right?

Yes. I am starting to think your compensatory lumber just collapsed under the thoracic curve. I have posted case studies from a surgeon abut this phenomenon. If your lumber really is still compensatory despite the angle, ask the surgeon if fixing the thoracic curve immediately will save the lumbar.

I also know that MRI shows lumbar curve at 32, standing xray shows it at 48, so I do know that it changes weight bearing. I don't understand how it changes that much being as i'm 5'8 and 130? It's not like i'm over weight.... this appt will be interesting....

That's the normal situation as far as I know. Curves straighten out somewhat upon laying down irrespective of body weight.

[Pooka1]

Yes, Pooka, they DO sometimes fuse compensatory curves. Depends on the situation.

I stand corrected.

What I meant was that it is insane to fuse a compensatory LUMBAR. Your compensatory curve was your thoracic curve where trading off cosmesis with flexibility is a no-brainer because there is very little flexibility in the T spine to begin with. So it's mostly all upside fusing a compensatory T curve. In stark contrast, is all downside fusing a compensatory lumbar. That would be insane.

[twistedRN]

Hi,
I am relatively new to the forum also (although was a fellow lurker for a few years!). I learned a lot from everyone here and also found a ton of support. As for your questions, yes, there is such a thing as do it early before age and other conditions can negatively effect your surgical outcome and recovery. I am 49 and am osteopenic. My doc told me it was pretty much now or never because of my bone density. On March 27 my spine was fused T3 to the sacrum with pelvic fixation. My pre-surgery curves were 59 lumbar and about 52 thoracic. Not sure what my actual measurements are now, will find out when I go for my 8 wk postOp appt this month. But my spine is significantly straighter and I gained an inch in the process! Anyway, all this to say that you may well run into complications as you age which might effect your surgery. As far as your question about progression during pregnancy, it sure happened to me - with both my kids. I was assured at 19 that my curves would not change but they changed with each pregnancy (makes sense with the weight you carry and the relaxation of ligaments etc) and then continued in my 30s and 40s. Best of luck to you and let us know what you find out and what you decide to do!

[rohrer01]

I stand corrected.

What I meant was that it is insane to fuse a compensatory LUMBAR. Your compensatory curve was your thoracic curve where trading off cosmesis with flexibility is a no-brainer because there is very little flexibility in the T spine to begin with. So it's mostly all upside fusing a compensatory T curve. In stark contrast, is all downside fusing a compensatory lumbar. That would be insane.

I'm one of those exceptions. If or when I ever have surgery, it will include my lumbar to L1 or L2, he wasn't decided. That really stinks because my original curve used to end around T6, I'm pretty sure. But then again, I'm one those collapsing cases. :-( At least I'm collapsing s-l-o-w-l-y. I think that's a good thing? :-)

[Irina]

What is collapsing spine? I find people mentioning it here, on the forum, but don't quite understand what it means.

[rohrer01]

What is collapsing spine? I find people mentioning it here, on the forum, but don't quite understand what it means.

It's when a previously stable spine starts inexplicably progressing. I have a new curve that previously didn't exist. Hmmm??? No explanations for it. I went to the chiropractor for two years to try to get pain relief without drugs. She worked pretty intensively on my curve and below it, which was a very small compensatory curve. Things broke loose and now I'm slowly progressing. One curve progressed about 6* in two years and the other very small curve progressed about 10* in that same two years making it a major curve. I now have to keep a very close eye on my curve progression. That's the best answer I can give. Oh, and ALL of the docs, including the sugeon, told me to stay away from the chiropractor from that point on.