Scoliosis Stories

Written by a Teen for Teens

My Story      

                    

          I realized that I had scoliosis when I was eight years old.  I was bending over when my mom saw my slightly, curved back.  My mom did not get me into the doctors until I was 10.  The orthopedist took x-rays of my spine and told me that I had a degree of 12.  He said the best treatment for me was to just watch and wait.  I knew I had scoliosis but I never thought that is was very severe.

          The next time that I was truly reminded of my scoliosis was when I was in the seventh grade (age 12) and I was doing the school scoliosis testing.  They told me that I should see a doctor because it was quite obvious that I had scoliosis.  I reminded my mom to get me into the doctor's office so they could check my spine.

          My next appointment was when I was 12.  They took x-rays of my back and I waited in a room for my results.  When the doctor came in, it did not look promising.  He told me that I had progressed to 36 degrees.  I was devastated.  I had progressed by 24 degrees in two years.  It seemed unreal.  The doctor told me that bracing might be the way to go. He said that braces were not scientifically proven to work.  My mind was racing with all the information.  If I reached a 45 degree curve, I would probably have to get surgery.  That was only nine degrees away and I had progressed 12 degrees in the past year.  My doctor told me that my potential growth affects how much my spine will continue to curve.  I had a year of growing left.  It took everything I had to not cry in the doctor's office.  When we exited the office I burst into tears.  I did not want a brace and I could not even imagine surgery.  My life was going to be different.  It would never be the same.

          I soon realized that if I was going to prevent the surgery, I was going to have to get a brace.  The brace sounded annoying and agitating but I had no other choices.  I went to the brace doctor about a month after my other doctor visit.  My orthotist is super nice and she is really good at her job.  She measured my body for my brace.  Then she gave me a thing that looked like a giant sock with holes.  I took off my other clothes (except my underwear) and put it on.  Then, she wrapped me in a sticky gooey material.  After a while, it started to harden.  It was like a giant, constricting body cast.  It was very claustrophobic.  Soon after, she took it off with a cast cutter.  She told me it could not cut me so I did not have to worry.  After that, I got to go home.  In about 2-4 weeks later, I went back for my brace.  It looked like a white, plastic tube that fitted around my torso.  It was not so uncomfortable but it did rub in some places.  In others, it felt very tight.  My doctor adjusted the "hot spots" for me and it felt a little better.  When I went home, I cried again.  It was all still very foreign to me.  My lungs could not expand like they could before.  After a day of trying to wear it, I told my mom that it was too much of a hassle and that I would not wear it.  Three days went by before I realized that I had to try it again.  If I did not, I would have to have surgery for sure.  I knew that it was going to be tough but I had to work through it.  "I am going to be strong," I told myself.  I had to conquer my fear for the health of my back.

          It took many trips back to the orthotist so that my brace felt comfortable.  After wearing it for a couple weeks it started to feel normal.  I wore it to school, out to restaurants and even to the supermarket.  I wore it almost everywhere.  I went back for x-rays of my back when I was 13.  It showed that without the brace I was at 17 degrees.  I was very excited.  I had changed my life!  All my hard work had paid off and it gave me confidence in myself.  No one else had done the hard work; it had all been me!

          I had another appointment with my back doctor where I received some very good news.  My doctor told me that again, I was only 17 at degrees.  I had also not grown since the last appointment.  They thought I had pretty much stopped growing which is great for my scoliosis.  Doctors believe that growing has something to do with scoliosis progression.  So, that was great news.  They also said that I only have to wear my brace at night.  Since I would not have my brace on all the time, the doctor said I would progress a little from the 17 degrees but not near the range for surgery.  The doctor hoped I would then stay at that degree. 

          I just had my final scoliosis appointment for the next five years.  My doctor told me that I am done growing and my curve is still at 17 degrees despite only wearing my brace at night.  I am apprehensive to completely stop wearing my brace because it decreased my curve by a lot.  My doctor thinks if I stop wearing my brace, I will progress a little from my 17 degrees but then remain at that degree for the rest of my life.  Like I said, I am worried to quit wearing my brace so for right now, I am going to wear it every other night and maybe later, one night every three nights.  My brace has been so successful that I don't want to stop wearing it.  It is ironic how in the beginning of my scoliosis experience, I didn't want to wear my brace and now I don't want to stop.

          I have put so much work into wearing my brace and going to appointments and even dealing with the emotional side of my scoliosis.  I really feel like all the work I have put in has paid off.  Sometimes I feel like I am the luckiest girl in the world.  My brace has really taught me that anything I put my mind to can be accomplished.  I know that whatever I go through, I will always remember that anything is possible.  I really hope that when people read this, they will learn that there is light at the end of the tunnel.  At the end, everything you have done is worth it and you will feel really proud of yourself.  This is my story.

 

Thanks so much for everyone who has helped make this website great!  I really appreciate everything you have done!

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Let me know your story. Tell me about your curve, your treatment, and how this condition affects your everyday life. Maybe I will post your story too! Please do not include your real name or any other names.  If you have a brace that looks different than mine feel free to email a photo to me.  Please do not send a photo with your face.

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