I've been thinking and researching scoliosis surgery for years.
About 14 years.
And thanks to the internet, I've almost totally Googled/WebMD'd myself into a maniacal state.
I've seen
hundreds of blogs, ranging from scoliosis support groups for those of us considering surgery to the extreme quackery sites. (The quack sites are made by people looking to make money, claiming that scoliosis can be cured/reduced from specialty exercise machines or programs done multiple hours per day. There is no medical evidence that these are permanent solutions and are generally looked down upon by medical professionals. Some programs can lessen curvatures by 1-2 degrees, just long enough for the company to snap an X-ray showing the "amazing transformation," not revealing that the results go right back to the starting curve within hours or the next day.)
I've watched dozens of YouTube video montages made mostly by teenage girls (feels like 95% of them), set to inspirational music, who are "back to cheerleading" in no time after their surgeries over summer break. I've searched for the worst case scenario stories: scoliosis surgery + paralysis, scoliosis surgery + revision surgeries, scoliosis surgery + wish I had never gotten surgery, etc etc.
I've even watched videos of the
actual surgery being performed. (Don't...but if you
must.)
I've browsed the official scoliosis support site forums for hours, where there are many people like me seeking answers. Afraid. Some of those threads are scary. If you want to find the small group of people who had complications from their surgery, they're there - commenting from their basement. But for the most part the posts are positive and part of the "Happy I Had The Surgery" thread.
When I was first diagnosed with scoliosis in Arkansas in 2002, my doctor had the "wait and watch" approach, which is common. I was done growing, and it was a 43 degree thoracic curve. Surgery is not usually recommended unless the curve is progressing or the curve is over 45/50 degrees.
Scoliosis Curve Types
This was fine by me, and I went along to college. After graduating, realized that I hadn't had it checked again (uh, whoops) and decided to see a local well known spine doctor here in Austin. He took an X ray and told me that my curve was 45 degrees*.
*A side note on curve measurements - there is a slight degree of error (some say up to 5 degrees) or difference that can happen between surgeons when measuring, just depending on which vertebrae they choose to start from and how they measure.
My doctor recommended spinal fusion surgery. At the time, this was 2008 and I was 24. He recommended that I have the surgery while I'm still young enough to recover more like a teen than an adult. I would heal quickly and could enjoy the benefits of having a straight spine for years to come. He said that curves around 45 degrees were more likely to progress as I got older, and that this is not the type of surgery I would want to have at 50 or 60 years old.
I was too scared. I just didn't want to deal with surgery. I also thought I was young and invincible. My friends and family were scared of the idea too. I walked out of there knowing that I wanted to get a second opinion, hopefully one that told me what I wanted to hear.
And I did.
The next year, I went to the Baylor Scoliosis Center in Plano for my second opinion. I saw a doctor there who measured my curve at 48 degrees (note the measurement difference between doctors) and he did not recommend surgery. He felt that unless I was in a great deal of pain, I should not go through with the procedure. (At the time I didn't have too much pain unless I walked for hours at a time or occasionally when I'd slept too long.) This idea of not having surgery was what I wanted to hear. So. much. easier.
I was r e l i e v e d and again went on with my life.
I continued to check in with the folks at Baylor for another few years. Their advice stayed the same - no pain, no surgery.
It wasn't until about a year ago that I started really thinking about my back again. I was newly single, almost 30, and began taking better care of myself. I have lost almost 50 lbs combined in the last several years, and the physical appearance of my deformity from my scoliosis has been definitely more visible since the weightloss. My shoulders are uneven with the right one protruding, one hip is significantly higher than the other, and my waist is asymmetrical and looks "pinched" on one side and straight on the other side. The right side of my back/shoulders does most of the work during the day. It carries the unbalanced strain of my entire body, building those muscles up on the right, while the left side of my back has atrophied. Lately I've had strangers and fitness teachers ask me if I have scoliosis. I guess it's definitely more noticeable these days...
I've also noticed a bit more pain in the last 2 years than years prior. This could be a combination of getting slightly older but also the fact that I am much more active now than before, when I was not exercising at all. I noticed that I've been sleeping with my arms above my head, helping me to breathe at night, which I feel can also be a side effect of decreased lung capacity due to my rib cage's rotation. I feel that my current assessment best represents what my true pain levels would have been, because previously when my doc asked, I didn't have much pain living a very sedentary lifestyle.
With all these things on my mind, I decided to go back to my original doctor in Austin who had recommended surgery to me back in 2008. I wanted him to measure me again at age 30, tell him about my second opinion I received, and to ask him if he still would recommend surgery to me.
New X rays were taken and it was determined that my curve had not progressed in the last 5 years that he could tell, but he still recommended surgery. He focused on my two main concerns: correcting the deformity and preventing the curve from progressing as I age. He emphasized that wanting to correct a curved spine is
not a cosmetic procedure, since it is truly correcting something that has grown deformed and my entire body is not aligned properly because of it. He also addressed my concern that a curve over 45 degrees is more likely to progress, but they really have no way of telling if or when it might do so. In extreme cases, severe thoracic curves can lead to decreased lung and heart function.
I'm not going to pretend that I don't also want this for the other reason of correcting the way my back looks. My back makes me cry when I try on clothes. I look at it in the mirror and it's frightening and maddening to me. It makes me cringe when I see myself in photos from behind, but I can delete those easily. It makes me nervous to walk ahead of people and be in front of a group when I know my back will be turned. It makes me extremely self conscious to be in anything form fitting or snug around my waist area or with my shoulders exposed.
Some women are jealous of each other for a number of reasons...Girl, I'm just eyeing your perfectly straight spine. What would that feel like? I'm sure it would feel amazing to have a dress hang the correct way that it was designed.
I would love to have a straight spine.
Decisions, decisions...
I get it. The thought of having major surgery will
always be harder and scarier than the option of just not doing anything. Staying the same. So safe - for now. It's kind of like the reason a lot of people are non-confrontational. It's hard to do the things you don't
have to do, even if it's for the best in the long run. Unless you struggle with constant, severe pain - something that you can measure and see and feel - it's very hard to do something drastic for preventative measures. Thinking of choosing to undergo a procedure now while I'm young in hopes that my future self can be happier and healthier is just...
bizarre, right?
