Scoliosis Stories

Written by a Teen for Teens

                                     Rachel's Story


               My name is Rachel, and I was diagnosed with scoliosis in the eighth grade when I was 13 years old. This is a personal story, and I would like to share my experience.  I am 19 years old, and my spine is now as straight as an arrow. Thanks to the spinal fusion surgery, I don’t need to be worried about my back getting twisted for the rest of my life.


                It all started back in high school. I was active in dance, cheerleading, and musicals. It was my passion to be surrounded and be able to participate in anything with music. I went to Kansas City every six months for checkups. Each time I went, the curve in my spine was getting worse starting from 30 all the way up to 46 degrees. The doctor said that if it went past 50 degrees, he recommended surgery. I refused to do it at first, and thought I would get through it.


                It wasn’t until my curve continued to get worse that I found myself in front of the mirror for hours, obsessed with the flaws that my body had. The left side of my rib stuck way out and was not equal to the other one. My hips were uneven and my body would tilt to one side while standing. My shoulder was higher than the other and my shoulder blade stuck out more than the other.  I had a ribcage “hump “on the right side when I bent down and it made me look like a hunchback.  By that time, I was getting self conscious about my body and it brought down my self-esteem. I couldn’t even wear a bathing suit or a dress in front of my family or friends without being self conscious. Having a hard time dealing with my figure, I never liked talking about it to anybody. It may not been very noticeable to some people, but my posture was terrible and it was ruining me.


                Not only had it affected me emotionally, but physically, too. The clothes that I wore didn’t fit me right and the shirts were always getting twisted so I was always constantly fixing them.  My rib cage was so twisted that it was squeezing my heart and lungs. This caused me to have a short of breath. I was having a hard time sleeping at night because I could never get into a comfortable position.  For as much as I love dancing, I had some limits. I couldn’t perform due to my back problem. I felt like I couldn’t do many of the things that I loved. With some encouragement from my family, I finally decided to do the surgery.

                I had to wait a few months before the surgery, which was on August 1, 2011. This was towards the end of the summer so that was a perfect time for me to take the whole summer as an advantage to go out clubbing and partying and what not. It was almost like I created a bucket list- except it was for things that I would not be able to do for a while.


                A few weeks before my surgery, I had to visit the hospital several times to prepare. I had a consultation with a nurse who prepared their patients for surgery. She explained what was involved in the anesthesia and where I needed to go on the day of my procedure. The closer my surgery came, the more anxiety I had. I was constantly worrying about what was going to happen to me, because there was a risk of becoming paralyzed or getting an infection. I was going through such a hard time. I tried to not show my emotions. Luckily, I had my family and friends there for me.


                Finally, the day of the surgery arrived. I had to wake up at 5 a.m. and be at the hospital by 6. I had all of my family in the waiting room while I had a nurse take some blood from me before going in. The doctors had me change into nothing but a gown and socks. I had nurses asking me several questions about everything. I already wanted it to be over with. Then, they put me in a bed and rolled me into the room where I was about to have my surgery. Before going in, I had all my family members right beside me saying that everything was going to be alright. My sisters and mom started crying, and then I cried. Everybody was crying. By that time, it hit me. I was scared and I wasn’t ready. So many things were racing through my mind and I couldn’t imagine myself going through this. But there was no turning back now; I had to finish this. My family gave me one last touch, and the doctors wheeled me into the procedure. Five hours later, I woke up to bright lights.


Two days after the surgery, the doctors were already getting me on my feet.  This was hard for me because I couldn’t focus on what I was doing because I was on so many drugs which almost made me throw up or pass out a couple of times. At that time, even something as easy as sitting up or rolling on my side was a challenge. A week after my surgery I came home and slept most of the time. My bed was brought downstairs in the living room because I couldn’t physically go up the stairs. My social life with my family and friends the next eight weeks of recovery consisted of watching movies and singing on karaoke. I couldn’t go back to my classes in my condition so I took a few online classes. As a couple months passed after the surgery, I was going through a depression stage. It felt like my life was taken away.  It felt like I was missing out on all the stuff that I used to do. There were days I just wanted to give up. I already knew what to expect before surgery so I kept reminding myself on why I went through surgery in the first place. I told myself that it was going to be worth it in the end.


It’s been about four months since the surgery and I’m still going through recovery. I’m doing so much better than before as my life each day slowly goes back to normal although I still have my limits. I’m finding myself loving life more and more and how thankful I am with all the people and things I have in my life. I was 5’2 before my surgery and I am now 5’4; growing two inches in one day. There are pins and screws and two flexible metal rods in my spine and I am slowly being able to bend a little bit. Today, the only reminder of the surgery is the long scar down the middle of my back, which will eventually fade in a year. No doubt this was a life changing experience and I learned so much and became stronger over the months. Refraining from noticing the pain and fatigue, I learned how important it is to have a positive attitude when times get tough. I still have a year before I am fully recovered, and I am looking forward to the day when I look back on in an overwhelming feeling of admiration and amazement.


 Thank you Rachel for letting me post your story!