My scoliosis story: One year later—celebrating surgery

Abby after scoliosis surgeryI’m Abby DiCocco. I am 12, and I have scoliosis. One year ago, on June, 5, 2014, I had magnetic rods, called MAGEC rods, surgically implanted in my back to help fix the curve. I was the first person at Boston Children’s Hospital to get the magnetic rods.

It was pretty amazing to be the first, but I was a little scared, too.

Before my surgery, the curvature in my spine was 65 degrees. After my surgery, it was only 10 degrees, a major difference.

My life is mostly all fun and games now, thanks to the surgery. Without the magnetic rods, I would be in the hospital constantly and out of school more than once every three months.

If life was like that, maybe I wouldn’t be so happy all the time, and my friends and I might not sing “Space Unicorn” all the time, and we might not love “Five Nights at Freddy’s” so much either.

In first grade, my parents brought me to Boston Children’s. I was diagnosed with syringomyelia, which is a cyst in the spinal cord. The syringomyelia was caused by Chiari malformation, a tonsil at the end of the brain that got elongated and was pushed into my spine.

Dr. Mark Proctor did a Chiari decompression (the surgery to remove my elongated tonsil). The cyst in my spinal cord shrank, but I was still left with scoliosis.

As I got older, things started getting harder. I noticed I was swimming crooked and was much slower than a lot of the people I knew. I often had pain in my back and shoulders.

My scoliosis brace

In second grade, I needed to start wearing a night brace. The brace was meant to slow down the curve or even stop it.

I absolutely hated the brace. It made me hot, and it was really uncomfortable to sleep in.

My first brace didn’t work, so then I had to get another brace to wear all the time. That one was even worse.

When that didn’t work either, my mom and I decided it was best to get the surgery. A month before the surgery, my doctor (Dr. John Emans) called and said that he might be able to get these newly FDA-approved magnetic rods for my surgery. This meant I wouldn’t have to have surgery to put in longer rods every year as my spine grew.

All the doctors need to lengthen the rods is a little machine full of magnets about the size of an Xbox controller. It was like a miracle.

My scoliosis surgery

I was really scared before my surgery, but everyone did their best to help me.

My mom and dad stayed right by my bed, and the anesthesiologist told me corny jokes when he was giving me the anesthesia. He was trying to make me feel better and also making sure the laughing gas was working.

After surgery, I went into the recovery room, and after a week, I went home. I recovered at home for two weeks, then I went back to school for the lastAbby running after scoliosis surgery two weeks before summer vacation and my fifth-grade moving- up ceremony.

Over the summer, I was restricted on certain things, as someone would expect after a surgery.

After six months, I had my first lengthening. It took five minutes to do the ultrasound, lengthen the rods and do another ultrasound to measure the rods. It felt weird, but it didn’t hurt. It was far better than surgery any time.

In March, I had my second lengthening. As of right now, I go to physical therapy because I lost a lot of range of motion in my arms.

I am back to swimming with my swim team and just had my first meet. I enjoy running and plan on learning how to play tennis and rowing crew this summer.

About the blogger: Abby DiCocco is a 12-year-old from Clifton Park, N.Y. She likes goofing off with her friends, playing with her dog Tucker and little sister Ainsley. When she gets older, she wants to go into chemistry, physics or engineering. Boston Children’s Hospital’s spinal team has cared for Abby since she was 6 years old.

Editor’s note: MAGEC rods are appropriate for some patients like Abby with early-onset scoliosis.

Read more about Boston Children’s patients with scoliosis.