Scoliosis Stories

Written by a Teen for Teens

                                       Amanda's Story


   Back in elementary and middle school, scoliosis is just a big word. It's just the thing you get checked for when the nurses look at your back. No one knows what it is. No one ever has it. No one thinks that it can change your life.

It was February 2009 when I was diagnosed with scoliosis and it actually wasn't by the school nurse. I was in my doctor's office, just there for my annual check-up, when the doctor noticed the curve of my spine when I bent down to touch my toes. He showed my mom and they discussed it, but to 12 years old, all I could pick out from the babble was the word "surgery," and I'm sure that would scare anyone.

When we left, my mom said that I didn't have to have surgery, but the doctors would monitor my curve to see if it got any worse. So I went and had x-rays done and I found out that I had what is called an "S" curve. Instead of one curve like a "C", mine had two, curving, coming back to the center and then curving again. My curves weren't terrible, but they were noticeable. (I can't remember the exact degrees, sorry.) They also weren't bad enough to have surgery or a brace, but they told me to come back in the next few months.

It was about 2 months later when I went back. If the curve had progressed I would have to wear a brace. And I'm not going to lie; I actually WANTED to have a brace. I wanted to be different and for people to notice me. I liked having attention, and I just thought I'd be special. So after my new x-rays they said my curves had progressed, and it was time for a brace.

I don't really remember TOO much from the early days of my brace, but I do remember going to get it fitted. A man took my measurements and soon I went to pick up my finished brace. It looked like a weird plastic tube with straps, and by then I was starting to realize that I didn't want a brace anymore. The doctors showed me how to wear it properly. They said my mom or dad would have to help put it on for the first few months, but that I would be able to put it on by myself very soon.

I remember walking out of the building wearing the brace. I was instructed to wear it 20 hours a day, so that meant while going to school, sleeping, and other activities, the brace would accompany me.

When I got home my back was already aching. It felt hard to breath and my stomach was very sweaty. I actually bumped into the doorknob, and I yelled, "ouch!" Even though my brace had hit it and it hadn't hurt at all, it was my natural reaction :)

I had to work up to 20 hours. First I only wore it for very short periods of 15 minutes. Soon for a few hours a day, and then I started sleeping with it. After the second week I had to wear it to school. I actually wasn't worried about it- I knew my corners would still accept me.

But I did have to get all new clothes. I wore a cami underneath my brace and then a bigger shirt (I had to go from a small to a medium/large) but soon I noticed the brace was tearing small holes in my nice shirts. So I wore ANOTHER tank top over the brace but under my shirt. Yes, three shirts. So you can imagine how hot I was.

Each year I had to take my brace off before gym. So I had permission to leave early and be late to gym because I had to go to the nurses and leave it there. So if you are worrying about lots of people seeing your brace in gym, just ask your nurse if you can leave it in their office.

After about a year and a half in the brace and being monitored, they let me take my brace off for eight hours a day. I was very excited and my mom and I went out to celebrate with MUFFINS! I no longer had to wear it to school, but I would have to put it on immediately after school, which was hard because I had soccer a lot days. So, sometimes I had to go over eight hours. (Shhh!) After another eight months, I was allowed to keep the brace off for 12 hours a day. When I started high school (this year, 2011) I had to wake up at 5:50 in the morning, which meant it had to go on at 5:50 when I got home. But I have soccer EVERYDAY after school and I didn't get home until 5:30, plus a shower. So I went a few hours over my time. I began to get lazy with my brace and I felt bad.

I just went to my orthopedist yesterday (Sept. 28, 2011) and they said I was pretty much done growing, so my brace could come off! I was (and still am) so happy. We went out to my favorite restaurant to celebrate. I still have to go back for more x-rays in a few months just to be safe, but hopefully I'm out of the brace for good.

Even though my brace was annoying, sweaty, uncomfortable (at times), prevented me from scratching itches and made me stiff, I actually liked it. It wasn't a bad experience at all; at least I didn't have to get surgery! All of my friends liked my brace and were fascinated by it. It gave us lots of laughs (we joked that I had "abs of steel" and once a girl saw the bottom of my brace and thought it was my butt, so she whispered, "Amanda, you're butt cheeks are showing!") It kept me warm in the cold winter months and gave me motivation to exercise (so I didn't have to wear it). I could tap and "play music" on it when I was bored and my friends and I would always tap to the beat of the music. It taught me important lessons such as never give up and made me appreciate the little things in life. I learned that if I can survive two and a half years of my brace I can do anything. I am starting to think about writing my story with my brace or basing a story off of my experiences. I also want to become an orthopedist, so I can help kids with bone problems, and especially scoliosis. I think it'd be so cool since I've had the experience and could calm their nerves ( it also helps that it has good pay :). Just keep up a positive attitude and you can actually have good times with your brace!



 Thanks you Amanda for letting me post your story!