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My journey with scoliosis: Casey’s story

By Casey Kent, CHOC Children’s patient

I was 10 years old when I found out that I had scoliosis. It runs in my family, and my pediatrician had been keeping a close eye on my spine, so I wasn’t too surprised. And at first, it didn’t really influence my day-to-day life.

Growing up, I played a variety of sports and after my diagnosis, I continued moving my body and staying active with tennis, softball and soccer. I eventually fell in love with cheerleading and dance.

After my diagnosis, my pediatrician referred me to Dr. Francois Lalonde, a pediatric orthopaedic surgeon at CHOC. I saw him twice per year to monitor the curve in my spine. It was getting more pronounced, so by the time I got to middle school, I started wearing a scoliosis brace to try to improve the curvature of my spine. Some people must wear their braces all day, but I only had to wear mine at night while I slept. After two years of sleeping with my brace on, Dr. Lalonde determined it hadn’t significantly improved the curve in my spine, so I didn’t have to wear it anymore and we just continued monitoring the curve. I was never embarrassed of this brace, but when friends came over for sleepovers during my middle school years I would have to explain to them what this brace was in my room. So, I was just extra cautious about who I let spend the night at my house.

During this time, I knew the curve was getting worse, but I only had mild discomfort, so I wasn’t in much pain. When I was 16, Dr. Lalonde and his colleague Dr. Afshin Aminian, another pediatric orthopaedic surgeon at CHOC, let me and my parents know that the curve in my spine had progressed to such a point that scoliosis surgery was the only option to correct it.

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Casey with Dr. Aminian after her scoliosis surgery.

I was kind of shocked to hear that I finally needed surgery, but I knew that surgery was going to make me better— the discomfort and spinal curve would go away, and I was ready for that.

We scheduled my scoliosis surgery for a few months later, when I would be on summer vacation, so that I would have more time to recover and wouldn’t have to miss school. I had never been to CHOC Children’s Hospital before, so the hospital setting was scary in my mind. Leading up to my surgery, my parents and I were given a tour, and the staff made sure I knew everywhere that I would be during my stay. That was peace of mind for my parents because they knew what was coming. I had peace of mind knowing a lot of other girls and boys had undergone this surgery before and had good outcomes. I just felt at peace at CHOC, and I knew that everybody wanted the best for me. It wasn’t a scary place at all.

I also knew I was in good hands with Dr. Aminian. He had a very calming presence, and he made me feel good about the decision to have surgery. I was never scared that anything would go wrong because I trusted him. He had done hundreds of these surgeries before, and that helped me feel super safe.

My surgery was a few hours long, and afterwards I was brought to the pediatric intensive care unit (PICU) to recover. I was there for a couple days for observation and pain management, and then I was transferred to the surgical unit for another few days before I was discharged.

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An X-ray of Casey’s spine, before (left) and after (right) scoliosis surgery.

I’d never been in the hospital or had surgery before, so I didn’t know what to expect for my recovery. I thought I would be awake or in pain, or maybe I’d struggle finding things to do and I’d feel bored. But my body was tired from surgery, so I honestly slept most of the time I was in the hospital.

One day on the surgical unit, I was having a hard day, and when another girl recovering from scoliosis surgery heard that, she sent me a flower. It completely cheered me up.

A few things that made my hospital stay more comfortable were bringing my favorite snacks for when I had an appetite and bringing a comfortable blanket from home. Before my surgery, my mom bought a couple pairs of inexpensive workout shorts and cut the lining out; I had something comfortable to wear in the hospital, and not having to deal with the shorts lining made it easier to use the restroom. Because I slept a lot, I kept my hair up in a bun so it wouldn’t get tangled. Although I had brought my smartphone and tablet to keep myself entertained, I found that I didn’t use them as much as I thought I did. I know some other patients who love reading brought books to pass the time. Volunteers would pop in and out of my room from time to time, offering to bring board games, video games or movies, which was nice. Although CHOC was a new environment to me, I felt so comfortable there that I was never scared. All the staff was really amazing, especially my nurses and Dr. Aminian.

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Casey and her dad, during her recovery from scoliosis surgery at CHOC Children’s Hospital.

Since I was in the hospital over the Fourth of July, we decorated my room with patriotic décor to make it feel cozy and homey. That was something I never would have thought to do if my mom hadn’t suggested it, but it made me feel even more comfortable.

Overall, the pain I experienced after surgery was different than I expected. I assumed it would be jolting or constant pain, but it wasn’t like that at all. Everyone goes through recovery differently, but I don’t think the pain was something other people couldn’t handle as well, if theirs was like mine. In the hospital, my pain was well-managed by my care team. At home, it took some time to navigate how to manage my pain, but it wasn’t as scary as I had made it out to be.

When I started my senior year of high school a few months after my surgery, I found a new normal. Although I could no longer tumble or stunt during cheerleading, I stepped into the role of co-captain and found other ways to still participate. It took me a few months to get used to what I call my “new body” and the correction made to my spine, so I didn’t work out for a few months. Now, I’m back to being as active as I was before surgery. I consider fitness a crucial part of my life; I am lucky to have an able body, and I feel my best when I’m active. I chose not to continue cheerleading in college but found that I love kickboxing classes.

These days, I’m studying business at the University of Southern California, and I’d like to pursue a career on the business side of the medical field. If I hadn’t had scoliosis, I wouldn’t have realized that this is what I want to pursue for my career. I want to feel like I’m paying it forward and helping people, even if not directly as a doctor or nurse.

Scoliosis has put a lot of things in perspective for me. Having been through a spinal surgery, I label myself as determined. I’m grateful for my experience. It has helped me become a better person; It has added to my story.

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