Surgery in a couple of weeks, quietly panicking.

[BadKitty]

Never was braced, and I don't even remember anyone suggesting it.

I remember going for xrays every so often as a kid when we lived in Durham, and always being "crooked" when I got older. Hemming my skirts at an angle. Wearing stuff without waistlines, no tight shirts, standing with one hip cocked out. I never suspected - and none of my doctors ever mentioned - eventual problems; not even a spine doctor I went to four years ago who told me my curve hadn't progressed, and proceeded to dictate (in front of me) that "the patient has a problem with body image." Gimme a break.

My curvature has only increased 2˚ in the last 20 years, and that could be just a margin of error in the xray interpretation.

[BadKitty]

That's kind of the way I feel, too; I just hate to be the one to make the decision!
He did give me all the information I needed, all the options, went over the pros and cons for each. He can't tell me what I'm prepared to live with in regard to the odds. Only I can make that decision, and I need to do more research and talk to more people like you. And it looks like you and your doctor made the right decision.

[BadKitty]

It looks like what happens even in sub-surgical curves, when age progresses to the point where spinal degeneration usually starts to occur (in susceptible individuals), the scoliosis exacerbates it because of inherent instability and abnormal stresses. I wish I'd known that a long time ago; probably would have cut back on the running and done more walking, yoga, strength training.
A new back isn't so easy to get.

[jChris]

Hi Kitty. I am having surgery with Dr. Geck on 10/25. I am going t-2 to pelvis. My curves are more significant than yours. I went many years with a curve at 72 degrees with no pain. About 4 years ago I developed debilitating pain almost overnight and it just gets worse. I asked Dr. Geck if I could get by with going with a shorter fusion, but he said I would have a 40% chance of facing the extended fusion within 2 years.

I have been through the gamut of emotions, including total panic. I am 2 weeks out now and suddenly have a strange sense of calm. I am not saying that I won't get nervous over the next two weeks, but I am to the point that I cannot take the pain any longer and see this as my chance to gain my life back, of course, after a long, painful recovery period.

I know this must be a very difficult decision for you. I have tried everything I know to try to avoid this surgery. Nothing has worked for me and I can't afford to let my progression continue (now at 80 degrees).

These are difficult decisions and I wish you the best with yours. I sought several second opinions before deciding on this surgery. Now I am committed to move forward. You have to evaluate your own unique circumstances.

If you do have surgery on the 26th, we will likely be passing each other in the halls of the hospital while progressing with recovery.

I wish you the best in your decision. Keep me posted on what you decide.

[BadKitty]

Wow, Chris! I didn't expect to come across anyone else from Austin here, let alone with the same doctor, having basically the same procedure at the same hospital, only one day apart.

It sounds like you've had a much more difficult time than I have. Since January I've tried mechanical decompression, physical therapy, and steroid injections before finding out that the L5-S1 disc is gone. The only solution for that is fusion, but when I went to the pre-op for my original surgery date in September, barely able to walk with spasms through the thoracic curve, Dr. Geck became concerned. Now I have to decide how far to go -- but I don't want to have to do this again, either, especially when I'm even older.

I'm ambivalent now because I've had very little pain except in my low back for almost a week. I'll talk to Dr. Geck about it a week from Wednesday at my pre-op visit, and go over the MRI. Maybe together he and I can figure out what to do.

The best of luck to you with your new back, and see you at the hospital!

Juliet

[debbei]

Having such a long fusion for cuves both in the 30's does sound extreme--but your surgeon must have his reasons. Do you agree?

As far as spasms, I didn't have ANY upper back spasms for my T66, L66 curves PRIOR to surgery. I had a BOATLOAD of upper back spasms AFTER surgery, for the first year and beyond. I'm just coming up on my 2 year anniversary, and I've hardly had any in the past 8-9 months, but I attribute that to my new exercise routine.

All I want to stress is that having surgery for spasms doesn't always FIX the spasms--sometimes it causes them for a while.

[BadKitty]

It seems like a lot to me! His reasoning is that if the thoracic curve isn't fixed, the stress that caused the L5 to collapse won't go away, but will "stack," causing the next level to go, and so forth, requiring further surgery. That's the only reason they'll even correct curves less than 40˚, progressive degeneration of the teetering tower of blocks. Sort of makes me think of a string of firecrackers going off.

According to the doc, the back spasms are a possible sign of trouble in the thoracic spine, and the first MRI did show bulging of the discs in several areas ... I expect I can look forward to even more back spasms afterward from the surgery, which is discouraging since I've been doing pretty well this week.

[Pooka1]

It seems like a lot to me! His reasoning is that if the thoracic curve isn't fixed, the stress that caused the L5 to collapse won't go away, but will "stack," causing the next level to go, and so forth, requiring further surgery. That's the only reason they'll even correct curves less than 40˚, progressive degeneration of the teetering tower of blocks. Sort of makes me think of a string of firecrackers going off.

According to the doc, the back spasms are a possible sign of trouble in the thoracic spine, and the first MRI did show bulging of the discs in several areas ... I expect I can look forward to even more back spasms afterward from the surgery, which is discouraging since I've been doing pretty well this week.

If they fuse only the lumbar then you can't get stacking (low at least) and the T curve might correct a bit or more just from straightening the lumbar. I know for a fact that compensatory L curves under T curves are driven straight, something almost completely, after fusing the T portion. Not sure it it goes the other way.

PS. I don't know what I'm talking about.

[BadKitty]

Since the lumbar curve is a compensatory curve, and the pressure from bearing all the stress of the upper curve caused L5 disc to fail, doesn't it make sense that fusing the L5 to the S1 would move the stress factor up to L4? One of my other doctors did mention that the lumbar fusion would (probably) modify the T curve, especially since I have a very flexible T spine. But he also said it would only move the stresses of the curve up from L5 to L4, which would eventually go bad too, and so forth.

I'm bone-on-bone at L5-S1, so fixing that is the priority for me. It's hard to tell that the thoracic curve isn't degenerating when I'm all twisted up with spasms, but since I've had a good week this week, I'm beginning to wonder ...

[Pooka1]

Since the lumbar curve is a compensatory curve,

Wait a minute. Your L curve is the same as your T curve (within measurement error) and yet they diagnosed you not with a double major curve but with a T curve? How did they determine your L curve was compensatory and not structural?

and the pressure from bearing all the stress of the upper curve caused L5 disc to fail, doesn't it make sense that fusing the L5 to the S1 would move the stress factor up to L4? One of my other doctors did mention that the lumbar fusion would (probably) modify the T curve, especially since I have a very flexible T spine. But he also said it would only move the stresses of the curve up from L5 to L4, which would eventually go bad too, and so forth.

I was asking about fusing the entire L curve (T11 or so to S1) and hoping that will drive some straightening or at least lessen the spasms in the T region by stabilizing/straightening the L curve. If you get stacking it will be much higher into the lower T area and it may not happen at all.

I know that in some kids they will only fuse one of two structural curves (the T curve) in double majors. I just have never seen a testimonial about what happens when you only fuse the L curve in a double major (if that is what you really have). Your T curve is very flexible... maybe that would be a win for you. Maybe this is related to that comment about you being one in a hundred patients. I have no idea.

[debbei]

Did you get several other expert opinions? I guess it could make sense, but I wouldn't take one doctor's word for it.

[Pooka1]

Did you get several other expert opinions? I guess it could make sense, but I wouldn't take one doctor's word for it.

You're not kidding. This seems like a very unusual case but maybe it isn't. Who knows.

But it seems like the surgeon wants to fuse a sub-surgical, non-structural, non-progressive, LUMBAR curve. I can't say I have seen a testimonial like that though that doesn't mean the surgeon doesn't have good reasons for doing this in her case.

[debbei]

Never was braced, and I don't even remember anyone suggesting it.

I remember going for xrays every so often as a kid when we lived in Durham, and always being "crooked" when I got older. Hemming my skirts at an angle. Wearing stuff without waistlines, no tight shirts, standing with one hip cocked out. I never suspected - and none of my doctors ever mentioned - eventual problems; not even a spine doctor I went to four years ago who told me my curve hadn't progressed, and proceeded to dictate (in front of me) that "the patient has a problem with body image." Gimme a break.

My curvature has only increased 2˚ in the last 20 years, and that could be just a margin of error in the xray interpretation.

Hi BadKitty,

Let me start of by saying, I am thrilled with my surgical results and I know I did the right thing. My curves were both 66 degrees and I was having nerve pain down my leg. But we're all in different situations.

I just read this post of yours---and if it were me I'd be very hesitant to agree to surgery at this point. As far as dealing with clothes that don't fit right, it's just something that lots of us scoli's have learned to deal with through the years. For me, it was something to complain about, but NOT the reason for surgery. Everyone has a different decision process on when/if/how to get the surgery, but I don't think there are many that would agree to such a long fusion for your curves. AGAIN, like I said in my last post, I'd urge you to go to some very experienced SRS surgeons who perform many of these surgeries per year.

((Hugs)), I don't mean to upset you BadKitty, but you should be 150% sure of your decision. Obviously this isn't something that can be undone.

[Pooka1]

I take it you have two issues:

1. no disc left at L5-S1 presumably due to the T curve (and somehow not at all related to the L curve which is the same size as the T curve)

2. incapacitating spasms in the L to T region.

Here are the questions I would ask of the surgeons:

1. Do I have a double major or a T curve or an L curve? What is the evidence?

2. How likely is a long fusion with my type of curve to stop the spasms?

3. If I have a T curve, can you fuse the T portion and also the L5-S1 level? Why wouldn't that work?

4. Why do you want to fuse a compensatory L curve (if it is in fact compensatory)? This sounds crazy to me when we have surgeons sometimes choosing not to fuse actual structural L curves. There is some reason.

5. Since PT is known to help with pain, can it also help with spasms?

Of course I have no idea of the details of your situation and you may have already asked these questions or know that they are not relevant.

Good luck.

[BadKitty]

LOL, Debbei! I just read your post ... I think you got the wrong impression!

In the post you quote, I was actually talking about how my scoliosis never gave me problems as a child or adult, other than annoying stuff like clothes that fit weird. That's not why I'm considering surgery! It's the crippling back spasms and disc degeneration that are making my life miserable.

Good news is that today I found out the doctor only wants to do a T10-pelvis, rather than a T2. Apparently I misunderstood him at the time of our last appointment, but the nurse cleared that up after my planning xrays today. I had wondered why he wanted to go so high for what I thought was a high thoraco-lumbar curve. And I may end up just getting the TLIF instead after all, depending on the MRI results and the doctor's opinion (and he is an excellent doctor).