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Samantha: Scoliosis

pediatric scoliosis patient Samantha

I didn't have to go to school for two months. While I was home, I napped a lot and took leisurely walks through the neighborhood. My grandma came to visit and my family waited on me. When I got back to school, my elevator privileges allowed me to skirt large, rowdy crowds in the hallways. I was the only person in my class who was excused from carrying a ton of books back and forth to school.

Now that things have returned to normal, there are times I wouldn't mind going back to the leisurely life after my spinal fusion operation. But the road from diagnosis to treatment was also a mental and physical hardship much of the time. I guess you could say my experience was a "mixed bag." It was often physically painful and emotionally taxing, but there were many rewarding moments as well.

The Learning Curve

I found out about the curve in my spine through a scoliosis screening that the school nurse conducted in sixth grade. My parents took me to see a doctor in Richmond, Virginia, and I was officially diagnosed with what was then a 25-degree curve (anything below 10 degrees is normal; 50 degrees or more requires corrective surgery).

Over the next two years, I wore two different kinds of back braces to keep my curve from getting worse. But despite the fact that I wore a brace every day, the curve in my spine continued to increase. After wearing a couple of different kinds of braces (they’re like corsets), I discontinued my treatment in Richmond and began again at Nemours Alfred I. duPont Hospital for Children, where I saw Dr. Bowen. Dr. Bowen is the head of the Department of Orthopedics at the well-known Wilmington, Delaware children's hospital.  I visited the doctor every couple of months, and in the fall of my ninth grade year, my X-rays indicated that my curve was holding at 35 degrees. At that point I assumed that I'd be like my mom, who also has scoliosis, but her curve is not severe enough to hinder her from accomplishing day-to-day tasks.

My parents and I were relieved, and we assumed that there wasn't much more to worry about. Although my curve was significant, it didn't pose any real threats to my health. The only way that it affected me was in my appearance. The S curve in my spine created a "hump" on the right side of my back. To someone who didn't know about my scoliosis, I looked like I had terrible posture.

Over the next several months, though, my mom noticed that the hump in my back seemed to be getting worse. The next time I saw Dr. Bowen, the X-rays proved her right: My curve had gone from 35 to 52 degrees. My only option, according to the doctor, was to have a spinal fusion, because the curve had reached the point where it would begin to put pressure on my heart and lungs.

Surgery

Dr. Bowen was honest and open with me about the procedure, which I appreciated. I tried to be brave as he described the surgery. It would involve connecting some of my vertebrae with pins and screws and placing two metal rods in my back so that the curve in my spine wouldn't get any worse.

As the doctor talked, many thoughts and questions raced through my mind, including whether there was anything I could have done differently to avoid surgery (but of course there wasn't). It didn't seem fair. I'd done everything the doctor told me to do. How could this have happened?

I was also concerned about school. How many weeks was I going to miss, and how was I going to get caught up? Finally, what if something went wrong during the surgery? I might not be myself afterward, I thought.

After the initial shock had worn off, I started thinking about when to have the surgery. Dr. Bowen said that I could wait a few months, until after the end of the school year. At first I thought that sounded like a good idea, but the more I thought about it, the more I realized that I just wanted to get it over with. I was afraid that my curve would continue to get worse, and I wanted to get the most correction from the surgery that I possibly could. In the end, we decided to have the surgery done as soon as possible. I only had a few weeks to prepare.

During that time, I had to visit the hospital several times. I had a consultation with a pre-op nurse at duPont Hospital for Children, whose job it is to prepare patients for surgery. She told me where I needed to go on the day of my procedure and explained what was involved in the anesthesia.

I don't remember much about the day of the surgery except drinking something that was supposed to relax me, and reading before they wheeled me into the operating room. The only thing I remember about that room is having some wires attached to my hand, feeling very relaxed and sleepy, and laughing at a joke that the anesthesiologist told. I remember feeling really comfortable and well taken care of that day. The staff members, especially the nurses, at duPont Hospital for Children were very attentive and kind.

For the first few days following my surgery, I slept a lot because I was receiving pain medication through an intravenous line. When I was awake, I had trouble turning from side to side and pushing myself up out of bed. Having those difficulties gave me a huge appreciation for just how often you use your back muscles without thinking about it.

Recovery

Dr. Bowen didn’t let me waste any time getting up and at ‘em –  he came in and helped me sit up himself just a few hours after my surgery. The day after my surgery, I started working with a physical therapist who helped me learn to get in and out of bed, sit in a chair, and walk around my room.

Eventually I worked up to walking around the hallways and going up and down steps. I know those things don't sound like much of a workout, but they were very difficult at the time. All of my muscles had to readjust to the new setup in my back, and I could feel that my body was oriented differently.

My hospital stay lasted about a week. When I was discharged, my parents took me to the Ronald McDonald House, which houses families of children undergoing medical treatment. Two days later, after a final checkup with the doctor, I finally went home.

My recovery period at home lasted about eight weeks. At first, it was very difficult to do schoolwork or even sit up for more than 15 to 20 minutes at a time. I thought it was really weird, because before my surgery I could sit for hours and do my schoolwork. I gradually worked up to sitting at the kitchen table and working with a homebound teacher. I also started to walk a little farther in my neighborhood each day. That was no small feat — I had to take baby steps the entire way!

For a couple of weeks it seemed like I was getting absolutely nowhere with my homebound teacher, because ninth grade was my first year in a very rigorous academic program at school. But at the end of my 2-month recovery, I saw the benefits of working with a homebound teacher two to three times a week. When I returned to school, pillow for my chair in tow, everyone was really glad to see me and I was caught up with all my work.

Although I probably won't ever be a ballet dancer or a gymnast, those activities were never really in my future anyway, and I don't feel like I'm at a physical disadvantage at all. For all I know, there isn't anything resembling pins and screws or two metal rods in my back. The only reminder of my surgery is the long scar down the middle of my back, which has faded a lot over the past year.

Although bouncing back from the surgery was rough at times, the rewards that came with the experience outweigh the negatives in the long run. Having a spinal fusion reminded me of how fortunate I am to be able to do things that we often don't think about or appreciate, like being able to sit for long periods of time, bend over, roll from side to side, and walk. I'll never take those things for granted again. I also acquired a new sense of appreciation for my family, as they were literally by my side throughout the entire ordeal. Finally, I learned how important it is to have a positive attitude when things get tough. Telling myself, "I can do it," was very therapeutic during my recovery and helped me ignore a lot of the pain and fatigue.

Advice for Others: Think Positive

Finding out that I had to undergo a spinal fusion was intimidating and frightening for me. But I found that between the wonderful doctors and nurses at duPont Hospital for Children, my family, support from friends, and my own motivation (by far my most important asset), my recovery was something that I look back on in awe and amazement. I wonder now how I recovered so smoothly, but then I remember that I had my own divinely inspired attitude with me the whole time. I would tell anyone who is facing surgical treatment for scoliosis to go into it with as positive an attitude as possible. In my opinion, you can't lose anything by being strong-willed and motivated to get better.

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