Patient Stories

Rachel Johnson

When I was fourteen years old, I was blindsided by a diagnosis of scoliosis. I was suddenly faced with the reality of having a severe curve in my spine that could only be corrected by spinal fusion surgery. I had been a passionate dancer since I was three years old, and I had no idea what my diagnosis meant for my future. What would my dancing look like after surgery? No one could tell me for certain, and that’s what scared me the most.

Following my diagnosis, my family and I began the process of searching for a surgeon. After appointments with a few doctors, we went to Nemours duPont Hospital for Children in Wilmington, Delaware and met with Dr. Suken Shah. As soon as we started talking, I knew he was the right doctor for me. After meeting Dr. Shah, everything went into fast motion. Before I knew it, the date of the surgery was set, and it was constantly looming in my thoughts. The day seemed to approach at an exponentially rapid speed, and by the time it arrived, I was absolutely terrified.

On July 6, 2011, I had spinal fusion surgery. Despite all my fears, the five-hour procedure went perfectly. Looking back, I couldn’t have asked for a better surgeon. During my five days in the hospital, I set my mind on recovery. I knew the worst was over, and all I had to do now was work towards getting my body back into shape.

The five-month recovery process was undeniably one of the hardest things I have ever undergone in my life, but it has completely shaped me into the person I am today. Slowly but surely, I got my body back to where it had been pre-surgery. The road was long and the journey was hard, but I now dance at a level that I never thought would be possible with two pounds of hardware in my back.

This entire experience has strengthened more than just my spine. I have learned so much about myself and discovered a confidence I never knew I had. This entire experience was an inspiration to me, so I decided to do my senior graduation project on my surgery. I made a video featuring myself, two of the girls I have mentored, and my surgeon, in which we all discuss scoliosis and how far it is possible to come after surgery. This video continues to make me smile every time I watch it.

Still, the most rewarding part of this entire experience came at my one-month post-op appointment. Dr. Shah asked me to mentor a girl from Bermuda who was about to have the same surgery I’d just had. One thing led to another, and I have now had the opportunity of mentoring several girls facing spinal fusion surgery. It has been incredible to be able to impact these girls’ lives so directly.

If someone had told me three years ago how much this surgery would change my life for the better, I never would have believed it. It is now clear, however, that it has been the best thing to ever happen to me, and I would not trade a second of this experience for any other.


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