new to boards lots of questions :)

[Irina]

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]

Perimenopause

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]

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]

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]

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]

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]

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]

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/showt...3*-at-maturity

http://www.scoliosis.org/forum/showt...her-than-later

[rohrer01]

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]

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]

Update but still confused

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]

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]

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]

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]

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