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king14
05-01-2012, 04:32 PM
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
05-01-2012, 06:15 PM
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
05-01-2012, 06:24 PM
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
05-01-2012, 06:53 PM
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
05-01-2012, 06:56 PM
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
05-01-2012, 07:15 PM
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
05-01-2012, 08:03 PM
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
05-01-2012, 08:54 PM
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
05-01-2012, 09:04 PM
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
05-02-2012, 05:37 AM
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
05-02-2012, 05:48 AM
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
05-02-2012, 04:03 PM
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
05-02-2012, 09:14 PM
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
05-03-2012, 11:19 AM
What is collapsing spine? I find people mentioning it here, on the forum, but don't quite understand what it means.

rohrer01
05-04-2012, 11:29 AM
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.

Irina
05-04-2012, 01:55 PM
So, collapsing spine is basically the same as progressing. I am progressing too... Was diagnosed at the age of seven, never had a surgery, now forty-four, but I don't have much pain. It's more of aches and mild, annoying pain at the end of the day. Sometimes I have hip pain, and this is when it gets worse. But nothing debilitating or preventing me from doing things I want to do.

From reading posts here, it seems to me that a lot of people have more back issues around mid forties. Makes me think - does it have something to do with getting close to peri-menopause/menopause?

Marina63
05-04-2012, 08:56 PM
My scoli surgeon told me that many women diagnosed with idiopathic scoliosis in adolescence will stablize for many years and then progress after age 40. This is exactly what happened to me and I have met/read about sooooo many women that fall into that category. I am not sure when my scoliosis worsened but I know that when I was checked at age 30, prior to getting pregnant, I was the same as I was at 16. Then, at age 47, I went back because of mild discomfort and some pain, I had progressed to 61 degrees. It was due to this significant progression that I decided to have the surgery. I must say, despite the tightness that I have in my thoracic area, I can now stand for long periods of time and feel completely fine. Many other things have significantly improved as well.

jrnyc
05-04-2012, 09:03 PM
Irina, for me, things got much worse after i herniated discs while at work...
before that, i managed well, worked full time, went to grad school nites, wkends, summers. etc..
after several grad degrees, i worked full time AND part time...thru all that, i made time
to work out, went to gym more than 3 times a week...i was a workaholic anyway...
but after i blew the discs out, my pain got worse fast...downhill all the way...

jess

LindaRacine
05-04-2012, 09:07 PM
I don't recall ever hearing this out of a surgeon's mouth, but I think degenerative scoliosis is actually the most common type of scoliosis. It's estimated to be somewhere between 6-70% of the elderly population. Degenerative scoliosis is believed to be caused by degeneration of the facet joints. As far as I know, having idiopathic scoliosis doesn't protect the facet joints. So, it shouldn't be at all surprising that idiopathic scoliosis curves worsen as the patient population gets into their 50's and beyond.

--Linda

Pooka1
05-04-2012, 09:16 PM
I don't recall ever hearing this out of a surgeon's mouth, but I think degenerative scoliosis is actually the most common type of scoliosis. It's estimated to be somewhere between 6-70% of the elderly population. Degenerative scoliosis is believed to be caused by degeneration of the facet joints. As far as I know, having idiopathic scoliosis doesn't protect the facet joints. So, it shouldn't be at all surprising that idiopathic scoliosis curves worsen as the patient population gets into their 50's and beyond.

--Linda

That makes sense. Given that, I wonder why surgeons are telling people any particular angle is protective against progression to surgery territory.

LindaRacine
05-04-2012, 09:19 PM
That makes sense. Given that, I wonder why surgeons are telling people any particular angle is protective against progression to surgery territory.
I think most of the docs who tell patients that small curves are protective against progression to surgery, are pediatric specialists. They rarely see patients after they reach adulthood, so they tend to have a slanted view of the true natural history of the disease. I also think that, until recent years, no one really knew that degenerative scoliosis was so common.

--Linda

Pooka1
05-04-2012, 09:26 PM
I think most of the docs who tell patients that small curves are protective against progression to surgery, are pediatric specialists. They rarely see patients after they reach adulthood, so they tend to have a slanted view of the true natural history of the disease. I also think that, until recent years, no one really knew that degenerative scoliosis was so common.

--Linda

That's a very remarkable observation. Maybe no AIS angle is protective against the pain, if not the progression, of degenerative scoliosis.

I think that comports with that one surgeon telling that one adult patient that despite having a relatively small angel, progress to surgical range was "not that unusual."

We need data and I don't know the answer. It may or may not be the case that the trigger angle should be decreased in the hope of avoiding this scenario if it is common enough. I just know that in a successful fusion, there is no possibility of DDD in the fused area. That's one upside.

Pooka1
05-05-2012, 07:35 AM
What is collapsing spine? I find people mentioning it here, on the forum, but don't quite understand what it means.

http://www.scoliosis.org/forum/showthread.php?12696-Two-more-collapsed-spine-cases-one-starting-at-only-33*-at-maturity

http://www.scoliosis.org/forum/showthread.php?12256-A-reason-to-do-surgery-earlier-rather-than-later

rohrer01
05-05-2012, 04:25 PM
This is all very interesting. I am over 40, but I am not peri-menopausal. I have very low FSH for myage at 5.9 . My doc said that would be normal for someone age 30 and I'm 43. ??? My physiatrist actually used the term "collapse" when he was afraid to use Botox around my spine, so it's all probably all in how things are phrased. I would say a collapsing spine is one that is thought to be stable and goes on to progress.

I don't think fusing smaller curves would necessarily protect against degenerative scoliosis, in fact, it might cause it. If there is more wear and tear on the discs above and below a fusion, they will wear out quicker causing anything from ruptured discs to scoliotic areas in the unfused portion of the spine. Having thoracic fusions, in my opinion, wouldn't be that "protective" either, since there are discs in the thoracic spine for a reason. It does take the impact from stress, too, even though it's not as flexible.

That's just my take on it for the moment.

Irina
05-05-2012, 04:34 PM
Thank you, everybody for your responses on "collapsing spine" question. Marina, I am so glad to hear you're doing well. I saw your x-rays - what a transformation! Amazing.

king14
05-05-2012, 11:16 PM
So I went to see Dr. A on Thursday and I left feeling confused with really no answers. Some answers I do know is that I am not "scoliosis special" My thoracic curve has been correctly measured at 53 degrees, my lumbar at 46. I wasn't incorrect in my last post, as the other dr physically wrote on the xrays, but when Dr A measured he said it was measured incorrectly the first time...
Anyway- he said i have to first address the 3 bulging discs before he would get into discussing surgery. I told him prior to my disc problem i had NO pain, NONE. very active, Very flexible etc. I asked if this could be the beginning of my "side effects" of scoliosis. Of course there is no real way to know. I know I need to address the disc problem, but I also want to have a clear vision, or plan re: my scoliosis too. I kinda feel like surgery will obviously put my life on hold for a little bit and I don't want to have that looming over my head. I also asked if it was more beneficial to wait to have surgery, have kids first, or after what did he suggest, and he said either way. Whatever I chose, would be the correct answer... Well it wasn't super helpful, but first appt so i'm not too discouraged.
I have appt with Dr Bederman next Wednesday, and I'm hopeful to see what he has to say. Super thankful for this forum !!

LindaRacine
05-06-2012, 01:08 AM
I don't think fusing smaller curves would necessarily protect against degenerative scoliosis, in fact, it might cause it. If there is more wear and tear on the discs above and below a fusion, they will wear out quicker causing anything from ruptured discs to scoliotic areas in the unfused portion of the spine. Having thoracic fusions, in my opinion, wouldn't be that "protective" either, since there are discs in the thoracic spine for a reason. It does take the impact from stress, too, even though it's not as flexible.

Degenerative curves are usually in the lumbar spine, but are sometimes in the lower thoracic spine. So, I agree that fusing smaller curves would almost certainly not protect against degeneration.

--Linda

Pooka1
05-06-2012, 08:44 AM
My thoracic curve has been correctly measured at 53 degrees, my lumbar at 46.

Okay that makes much more sense because the T curve is the structural curve and the larger curve.

My question to these surgeons would be what level would the fusion end at now versus what might it go down to if you wait? It might mean the difference between only have a T fusion or needing an eventual fusion to S1.

titaniumed
05-06-2012, 09:54 AM
King

I battled 4 CT verified lumbar herniated discs from 2002 till 2008 when I had my surgeries. I used Celebrex....which worked well for 95% of the pain, but was really hard on the stomach, and I gained weight. I eventually quit Celebrex and Bextra in Sept 2002...Even though these meds (NSAID’s) work well, I knew I had to quit, and this was before they were black listed. They are really hard on the body, I could feel it.

There were a few times that I was able to help in getting the discs to retract, one was swimming in the ocean in Hawaii (no, not pipeline lol) and VAX-D treatment, which is computerized traction. After some time (approx 9-12 months) it seemed that the familiar sciatica hip and leg pain would re-occur, and I would have to repeat my actions. I also did many massages. I have done Chiro since 1987, have had great pain reducing results, but it just wouldn’t work for my herniated discs....

I never did any shots and cannot comment. They were offered but the timing didn’t happen. I decided that at age 49 that waiting was no longer an advantage.

Leaving a surgeons office and feeling confused happens to ALL of us...We as scolis have to absorb quite a bit of material if we want to understand what is happening to us....its our disease. We have many here that are older, that have hung in there through the years........its great to be able to read the testimonials.

Can you post your x-rays? Your x-rays probably look like mine many years ago. I had twin 50”s at age 16 and they held for many years. I had a double rotational, perfectly balanced “S” curve.

Hang in there and keep reading and posting.
Welcome to the forum
Ed

jrnyc
05-06-2012, 10:59 AM
i took Vioxx...it was fantastic, until i had an allergic reaction, and it almost killed me...
cut off my breatheing...til then, it worked best of anything i had tried...
so i could not take Celebrex or any of the rest of the Cox 2 inhibitors...
too allergic to the ingredients...
too bad they can't come out with a safe version of Vioxx...

until i had a bad reaction, the sacroiliac joint steroid shots were a blessing...
i think the pain they elimiated was connected to where i herniated discs, in lumbar...
no doctor could figure out why injecting in SI joints worked, when none of other shots helped
the pain....
too bad that amount of steroid sent my cortisol into the basement....
wish there were a way to figure out how much would help, and not be too much

jess

king14
05-07-2012, 09:12 PM
Can you post your x-rays? Your x-rays probably look like mine many years ago. I had twin 50”s at age 16 and they held for many years. I had a double rotational, perfectly balanced “S” curve.



I sure will as soon as i learn how to navigate this forum. I've been having some issues with Private Messaging too. I am computer savvy but this site doesn't agree with me. But yes, I will post them!

And I've been doing hydro therapy for my discs and let me tell you. If I could figure out a way to LIVE in a pool, short of becoming a mermaid, I would do it. How LOVELY is this form of PT. :)