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Patient Stories

Madison P

In 8th grade, my school would check students for scoliosis. When it was my turn, I got the all-clear. A couple of weeks later, my mom and I went to the doctors because I had injured my left knee at dance. After the appointment, it wasn’t my knee the doctor was worried about, but my spine. That was the day I was diagnosed with mild scoliosis.

Thinking nothing of it at the time, I ended up going to see a specialist where they suggested tracking my spinal growth with pictures and going to physical therapy along with a regularly scheduled check-in appointments. Unfortunately, the summer before sophomore year my mom noticed that my upper body was starting to lean more to right. My center was way off to the point where my shoulders were uneven (right shoulder higher than left). It turned out I hit another growth spurt, which was a surprise because I was 15 and supposedly done growing. We made an appointment with the specialist who then wrote a referral to see orthopedic surgeon Dr. Newton at Rady’s Children’s Hospital.

After making appointments for x-rays and having consultations, Dr. Newton suggested that I had a spinal fusion before it becomes any worse. Spinal fusion is when hooks, wires, or screws, in my case screws, are placed in the vertebra that helps hold the rods to the spine, then applying a bone graft which will allow the vertebrae to grow together or fuse with bone connecting each vertebra to one another. Understanding what a spinal fusion is can be quite complex, but if you think about it, it’s like a cast, an “internal cast”. Just like getting a cast for a broken arm to prevent movement, allowing the bones to heal, a spinal fusion is a permanent cast to prevent curvature growth (movement) of the spine.

When I was first diagnosed, I was told that I didn’t need a back brace which was a relief because I didn’t want it to get in the way of dance. But after hearing Dr. Newton suggest a spinal fusion, the first thing that I asked was “what about a brace?” The one time I was hoping for a back brace to be an option, it wasn’t. My scoliosis progressed so much that a brace wouldn’t be any help.

I tried so hard to convince my parents to postpone my surgery for after I graduated high school or even college so I could continue to dance without taking a year off. I was also worried that the spinal fusion would completely alter my ability to dance the same way, or even worse, prevent me from dancing again all together. Dr. Newton reassured my parents; mostly directed at me, that the success rate for spinal fusions was higher than the rates for surgical complications and that I would be able to go back to dancing a year later with minor changes to my ability for dance.

No matter how many times I was reassured that I could go back to dance in a year or how many stories I heard about other spinal fusion patients going back to play sports such as football, wrestling, swimming, soccer, and more, I still wasn’t 100 percent convinced that I would have the same outcome. I continued to fight my parents on getting the surgery, but my parents decided that surgery was the best option and scheduled the date for Thursday, December 17, 2009. Then before I knew it, it was surgery day.

I was diagnosed with a severe anxiety disorder at a young age and take the medication in the morning to help manage and prevent panic attacks. But on the morning of December 17, 2009, I couldn’t eat anything hours before surgery, which meant I couldn’t take my daily medication for anxiety disorder that morning. So, my anxiety was heightened way more than usual. But things became more interesting. Turns out that waiting to be taken back for surgery was the scariest and hardest part for myself, family, and friends. When it was time all I can remember is walking into that big room, laying down, and laughing at something a nurse said before falling asleep. Four hours later I woke up and in about a week I was back home. Then, within a year, I was back dancing and doing everyday things. It took me a while to overcome the uncertainty that I was 100 percent healed and could just jump back into everyday life. But once I overcame that feeling, it’s been nonstop ever since. Not only was I back dancing, but I was going to week-long church camps with friends, going on mission trips, going to the beach, and more.

After this experience, I have noticed that there is this negative stigma surrounding the idea of spinal fusions. Yes, it’s true that spinal fusions don’t “cure” scoliosis, but it did improve my quality of life and the quality of life for others. Everyone’s experience and recovery are different. I was fortunate that my outcome was way better than I was expecting. I want to help people see and understand that medical procedures and technology have changed juristically over the years. The research being done on scoliosis today has found numerous ways to help prevent curvature growth in possibly less restrictive and less invasive ways. Before my surgery, I agreed to take part in Dr. Newton’s research that he is conducting for Scoliosis Straight. Ever since then, I’ve been following the research being done on scoliosis and continue to share it with others.

I’ve been fortunate enough to be able and use my experience to help a friend who had to get a spinal fusion and talk to other patients and families about what to expect and how I’m living an active and healthy life today. I’m still taking dance, even better I get to help teach children how to dance. I’m working with children lifting them in and out of wheelchairs and working out at the gym no problem. If there’s any back pain, I can say it’s not from the fusion but from injuring my back like anyone else without spinal fusion.

But the cool part is that I get to show off a 12-inch scar on my back and wear it with pride. I even made a friend while waiting to get my blood drawn. Turned out she was having the same surgery on the same day right before my scheduled time. We would walk back and forth to each other’s rooms while staying in the hospital (the more walking you did, the sooner you could leave) to check in with each other and continue to keep in contact today.

Being able to share my story and support others going through this experience has meant a lot to me and I can’t wait to continue using my story to spread the word about scoliosis and how it can impact one’s life.

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