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View Full Version : I need some support & advice



Houstongirl
10-22-2008, 10:38 AM
First of all, let me introduce myself, as I am new to this forum. My name is Beth and I was diagnosed with scoliosis by one of those "bend over" tests at school when I was 14 years old. I wore a Charleston brace (night only) for about 2 years. When I was released from my ortho's care in 1994, my curves were at 43 thoracic and 48 lumbar. I was told that I had stopped growing, would have no further progression in my curves, and that surgery would not be necessary. But, about 6 months ago I noticed that my right hip was hurting when I tried to get comfortable in bed and I could no longer sleep on my stomach, as that caused a lot of lower back pain. I noticed my back started getting fatigued more easily than usual. I went back to the doctor (different doctor than before) to do current x-rays and see if my curves had progressed any in the last 14 years. Well, I am now at 55 thoracic and 53 lumbar. He has prescribed physical therapy, which I've been doing the last couple of weeks, but I can't tell a huge difference. He said to come back in a year to get more x-rays so we can tell how much it has progressed in that time. I'm pretty sure he's convinced I'll need surgery eventually, but just doesn't want to say it for sure. But he did say if/when we do surgery it will be very major due to the fact that my thoracic is pretty high and lumbar is very low.

What do you guys think? Do you think I should have surgery? If so, when? I'm 31 years old, have a 2 year old son, and am trying to get pregnant with my second child. I really would like to wait for at least 10 years so that I don't have "babies" anymore, but I'm wondering...how bad will the pain get? Do you think I have any other valid options? Any advice or thoughts you guys have would be greatly appreciated. I am a big baby when it comes to surgery!!

Thanks!

txmarinemom
10-22-2008, 11:42 AM
... When I was released from my ortho's care in 1994, my curves were at 43 thoracic and 48 lumbar. ...

... I went back to the doctor (different doctor than before) to do current x-rays and see if my curves had progressed any in the last 14 years. Well, I am now at 55 thoracic and 53 lumbar. ...

... What do you guys think? Do you think I should have surgery? If so, when? I'm 31 years old, have a 2 year old son, and am trying to get pregnant with my second child. I really would like to wait for at least 10 years so that I don't have "babies" anymore, but I'm wondering...how bad will the pain get? ...

Hi, Beth ...

Out of curiosity, are you currently living in Houston? (I ask because I am ;-) Is your doctor an SRS fellow (i.e., is he a regular ortho or spinal ortho ... or someone who specializes in spinal deformity/scoliosis)?

As far as thinking surgery now? With a 2 year old/actively trying to get pregnant, I think the "watch and wait" for a year to examine progression (or non-progression) is good advice. What leads you to believe your current doctor thinks you will need surgery at some point?

If you decide to have the surgery, maybe you can wait 10 years ... maybe you can't. You won't really know until you look at films a year out compared to your baselines now. I waited until I was 39-1/2 to have surgery on a non-progressing curve ... and then, only because the pain was increasing.

It may sound like a lot of movement, but curves measured at 43/48 in 1994 (and at the end of 2 year bracing period) to 55/53 in 2008 (and after one pregnancy, where curves can move from increased progesterone levels in some people) isn't all that significant.

Do they feel both your curves are structural, or one structural/one compensatory? Your lumbar curve falls within the 5 margin of error for the Cobb (my thoracic structural curve measured 48-53 over the years), and actually (just incase you don't know), that margin of error can increase to 10 with a different x-ray tech/radiologist/surgeon measuring the curve.

I'm not discounting a 50+ curve can cause pain because I know it can, although some people have pain with lesser curves - and some have no pain with much higher curves.

Unfortunately, no one can tell you how bad *your* pain will get. It may increase, it may not.

Exercise (particularly yoga, Pilates, working on a balance ball ... and anything that strengthens your core) has the potential to help manage pain. Nothing worked for me, but any/all of the above work for some. At the very least, a strong core WILL help carrying another child easier, and is just good for you in general.

I wish there were more concrete answers, but everyone's different. For example, curves measured at 50 are typically expected to move 1 per year. Mine didn't, however. And that was through 2 pregnancies.

Despite all the "maybe so/maybe not" replies, welcome. You'll find lots of valuable info here to make an educated decision for your particular circumstance.

Best regards,
Pam

Houstongirl
10-22-2008, 03:03 PM
Thanks for your post, Pam. It was very encouraging! Yes, I am in Houston. (How did you know? ...just kidding) And I would love to talk with you sometime. I grew up in Dallas and was initially treated there at Scottish Rite by Dr. Herring. About 4 years ago I moved to Houston after getting married. My doctor here is Dr. Meyer. He is an Ortho Surgeon specializing in Scoliosis and other spine problems.

I'm relieved to hear you say that you don't think my progression has been very dramatic, because I was thinking it was a lot! And it was nice to hear that you had 50+ curves that didn't progress. I was under the impression that future progression after 50+ was a forgone conclusion. Also, I hadn't considered the "margin of error" that you mentioned. Given that, who knows, maybe they haven't moved much at all. :)

Not sure about curves being structural vs. compensatory. I've never been told that.

I've been doing PT 3 times a week for the last couple of weeks. Sometimes I think it's helping, sometimes not. On the days I go, my back actually feels much better, but a little worse on the days I don't go...weird. At this point my pain is very minimal, more like a nagging discomfort. But it's nothing I can't handle....for now.

As far as what leads me to believe that the dr. thinks I need surgery in the future, I'm not sure exactly. It was just the impression I got. I don't know, maybe it was all in my head because major back surgery is my worst fear!!