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View Full Version : New here & Surprised that surgery was recommended



sed78
04-21-2009, 01:49 AM
Hello,

I am new to the forums, but not new to scoliosis! I have two curves, the lower one is structural and the upper is a compensatory curve.

I was dx at ~13 yrs old and I am now 31 yrs young :) I wore a Charleston bending brace for around 4.5 years, as my curve was not deemed significant enough to warrant surgery. When I had my "final" appointment at age 18, my ortho dr. told me that my curve would probably never progress. At that time the Cobb angle measured in the upper 30's.

About 5 years ago I went back because I wanted to check up on how my spine was doing. I had been through two pregnancies and was worried that the curves may have gotten worse. I had the x-rays and was told my curve was in the lower 40's. The doctor did not really recommend specific follow-up as my curve was much different --- just to come back if and when it bothered me/seemed worse.

So, that was about five years ago. I have experienced increasing discomfort due to my curve, however I don't have intense pain. I would classify it as more of a discomfort that occurs when standing or sitting in certain positions or for a long period of time. Honestly it is just something that I expected to deal with, having a crooked back and all!

Then, when I went in for my annual exam with my primary doctor I inquired about getting my spine checked out again. I was referred and went in for the x-rays and appt. with a different ortho doctor at our community's new Spine Institute. Here is what I found out:

Currently, my (lower) curve measures ~50 degrees. It is classified as Lenke 5CN - not sure exactly what that means yet. It is a thoracolumbar curve, so the main curve is in the thoracic/lumber region and the upper curve is compensatory. Due to the fact that the curve appears to be progressing (albeit somewhat slowly, ~12 degrees over 13 years) and that I am experiencing discomfort - SURGERY WAS SUGGESTED!!!

I was actually in shock, I guess it still does not seem real yet. All through adolescence I was told that my scoliosis was not bad enough to warrant surgery, and that surgery was not often done on adults.
...The surgeon told me he would likely fuse T-10 or 11 to L-2 or 3. He would need to see bending films to figure that out. He recommended an Anterior-Only approach. Is this common for my type of curve? It seems like most people have either posterior-only or a combined P-A.

Okay, I am writing a book here! I will stop there for now but I would love to meet more people who have been through this surgery or are going to be doing it sometime in the future.

--Steph

LindaRacine
04-21-2009, 12:12 PM
Hi Steph...

Welcome!

I think I understand what you're going through. When I first heard the same news, I couldn't remember any part of my hour long drive home.

In general, curves <40 degrees aren't operable, while curves >50 degrees are, but there are other factors. The 3 most important factors that help surgeons in terms of recommending surgery are curve magnitude, pain, and progression.

It sounds like your pain is minimal now. Unfortunately, there's no way of knowing what your pain will be like in 10 years. If you knew that the pain would never get worse, it would probably be wise not to do anything at this point.

Did the new doctor look at the previous xrays to confirm progression?

You're well on your way in terms of research. As the facts sink in, I think you'll find that they're not quite as jarring.

Regards,
Linda

mauxi
04-21-2009, 01:53 PM
Hi Steph,

Welcome to my world - although my curve is more advanced and I am 6 years older. I am in the same situation and waiting on a second opinion appointment to find out more. Doing research helps, but I am over doing it. I ended up reading the Scoliosis Research Society presentations last night, as if I was going to understand all the terminology:rolleyes:
I just got copies of my medical records and the Dr. wrote in my last visit that I was going to need surgery at some point to take care of this. I am thinking a lot about timing these days.

sed78
04-21-2009, 03:23 PM
Thanks for your responses so far. I understand the timing issue you mentioned. I mean, when is it ever a good time to take months away from your life for something as huge as this?

I will finish my graduate degree in August and was originally planning a job search at that time - now I am thinking this is probably a good time to have the surgery, as I will be done with my educational program, my two boys (ages 6 & 8) will be back in school for the next year, and I won't be just starting a new job. But then again I wonder if I am jumping into things and should just wait? It is hard for me to take an objective look at this as I am a part of it.

--Steph

50 degree thoracolumbar curve
Lenke Classification 5CN
Dx at 13 years old, 4 years of bracing
Currently 31 years old
Dr. recommending anterior fusion T10 - L3