Monday, March 16, 2009

Straightening it out

Unless you have seen me in a bathing suit or I have had the pleasure of telling you my awesome story about the cool scar and shown you how metal can be felt underneath the skin (say that 10 times fast!), it is likely you don't know about my body's fight against a straight spine. The curvature when first discovered (I was 12) measured about 55 and 60 degrees. They start doing surgery when curves hit the 40s. Less than 6 months later I was on the operating table and being given 2 inches of vertical height in 8 hours.

Even though I had to say goodbye to my professional aspirations of gymnastics, soccer, softball, and basketball fame for a year after the surgery, (which also put a kink in my thoughts about serving in the military) having rods along my spine hasn't stopped me from doing most things. Running after small children, teenagers, and college students at summer camp for 5 summers, namely, as well as hiking in China, Tanzania, Morocco, France, and Luxembourg. And it did stop me from mandatory high school gym, since my hips really hurt from running. When I found out your grade was determined in a large part by how fast you could run the mile, I went running to my doctor and pleading for a note. The only unfortunate thing about that was I spent the next 3 years wondering if they'd determine phys ed wasn't too hard for me and not give me a diploma..


I've been reading some horror stories about scoliosis, though. Like people's instrumentation corroding, losing the ability to work, losing an average of 11 years of their life because of the scoliosis...sometimes I do wonder where they really get those statistics. And it's interesting that there's only one site that sounds legitimate when I've looked around a fair bit.

My Back

With the amount of people that have this surgery, I'm glad to see that there's been progress online to educate and give support to those involved. But I still am not content with the amount of information for post-surgery folks. Unless you count those few months afterward, when people formulate their youtube informational videos (which I appreciate!) and document that moment in time.

Then, it seems, we move on and it's no longer a part of our lives. Understandable, when there are so few of us, really. I've never met someone who had the surgery. Only ever heard of a friend of a friend's daughter/niece who might be having the surgery and offered to share should they be interested.

One thing that concerns me is the future of us post-ops who don't have the now obsolete Harrington rods we know that these rods have snapped on people and a lot of the negative press you can find on scoliotic surgery is because these rods were used. But there just aren't patients who have had these other rods long enough for us to know. I'm finding out the my type of rod, Cotrel-Dubosset first came out in 1984 which means it wasn't used by lots of people until the late '90s and testing had determined they were worthwhile. So I join the millions of patients around the world who have had procedures done not knowing how it will affect their long-term future.

Will I turn out like that horror story website says, and in another 10 years have the same pre-op measurements because the surgery's effectiveness disappears after 22 years? Will I be legally disabled when I'm only in my 40s because of complications from a surgery I had at age 13?

Just some thoughts for a rainy day. And those certainly aren't around this week! Wahoo!!!

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