My name is Karina. I’ve had scoliosis since I was two years old. When I was two, I was first taken to a chiropractor, who took x-rays and saw a very small s-curve in my spine.
“It’s only about 12 and 15 degrees,” he said. “Nothing to worry about.”
And it wasn’t — that is, until we noticed my right shoulder blade sticking out at a 95 degree angle to my body.
I had never been comfortable with my body, and because of that, hid it under baggy clothes, large sweaters; I never let anyone see me dressing and my parents and I are not the sort of people to talk about my body or my issues that lie therein.
But when we noticed that shoulder blade, we figured that something had to be up. I hadn’t noticed it (I made a point not to look at my body, really) but my mum did when I came downstairs for breakfast in the summer after I turned thirteen. We went to the doctor who took further x-rays. When the x-rays came back, you could see the confusion and intrigue on his face.
“Well, I’m going to refer you to an orthopaedic specialist. Your scoliosis has gotten worse but I’m not sure how bad it is. Let me just write this phone number down and you can give them a call.”
We left that day at the doctor’s office anxious, with a phone number in hand and millions of terrifying possibilities swirling in our heads.
We went to the specialist a week later — he immediately took x-rays and a CT scan, and after he spent half an hour pouring over them, he came back to me and told us the news.
“You have a curve of 70 degrees and 78 degrees. If you don’t have surgery, it’s likely to get worse. When did you notice this? Have you been having any pain?”
We had only noticed it like this in the last few months, and yes, there was pain. My back hurt every day coming home from school and three Aleve pills twice a day was what it took to keep it under control.
“I’m going to order some more tests, but we’ll check up on your back in a month to see how it progresses.”
When we went back in a month, my spine was now at 75 and 82 degrees: a degree a week, all but.
We were scared. We went to see Dr. Kim Hammerberg at Rush Medical centre in Chicago, Illinois, who got me into emergency scheduling. My spinal cord wasn’t being pinched — yet. I was twisted around over 60 degrees, and my spine was getting worse. After dozens of preparatory appointments and meetings, they decided on two surgeries: one to make my spine straight and one to untwist me.
On the day of the surgery, we had to drive four hours to be in Chicago at 5:00am. My spine was at 87 and 93 degrees. The first surgery took 11 hours, and I was in the intensive care unit for a few days. After those few days, my second surgery was scheduled. This one took nine hours, and had some minor complication with blood loss. The hospital stay is hazy but I know I was there for two weeks, and I do remember never having been in as much pain ever before.
I was out of school for three months. My surgery team had managed to get my spine almost completely straight, fusing everything from the neck down. I have three rods, over seventeen screws, two bone cages, and three wires in place over my spine, making me light up a little like a holiday decoration on my x-rays. I can easily say it is the most grueling experience I have ever undertaken. It has been four years and I still occasionally struggle.
But now I will live past thirty years old, as they weren’t sure I would be able to. I can go on a half-hour walk without worrying about how much pain I will be in in later. Yes, there is still pain, but not as much, and I know it won’t be getting worse. I am beyond thankful for choosing to undergo surgery, because now I can look in the mirror and see my massive scars and know that I am firmly alive and that that is not likely to change any time soon.
Scoliosis isn’t a disability. It is an opportunity to learn more about yourself, more about the people around you, and more about being human. You may have curves and pain and surgeries and trials galore, but you are made better for them.
And hey, curves are sexy, right?
Feel free to message me or follow my blog. I’d be happy to share tips and tricks to handling live with scoliosis, before and after surgery. Good luck!
Karina www.noreasterly.tumblr.com
This is a truncated version of my story on The Major Scoliosis Problems.