Since the age of 4, I’d gather my friends for backyard concerts strumming on my princess guitar. My family would say music was my sport! For years, I’ve taken dance classes, gymnastics, and performed in 20+ musicals with a dream to be on Broadway.
Because of all these activities, I thought my back was just tight. I’ve been to the doctor for colds and concussions, but we didn’t know ‘to get checked’ for scoliosis.
One day when I was 13, the office manager at Wittler Orthodontics, Julie Downs, spotted my shoulder blade sticking out. Before this, my scoliosis went unnoticed. She called my mom later that day after talking to her boss as to whether she should say something. We’re so grateful she spoke up.
Upon looking at my x-ray on the screen, a surgeon said, ‘You have severe scoliosis with a 48º curve and I recommend fusion when you’re done growing.’ I cried as I thought my dream of performing was over.
Upon consulting with a few doctors in different states, they all said my diagnosis was too late for bracing to be effective. Most surgeons also recommended fusion because it was the most traditional. But, our online research led us to a new device, vertebral body tethering (VBT) which consists of titanium screws and a rope to maintain spine flexibility rather than fusion with steel rods. The FDA approved VBT in August of 2019, the same month as my scoliosis diagnosis.
My Mom, Dad, and I went to New York City to see Dr. Lonner at Mount Sinai, one of the pioneers of VBT. The best part was I got to see two Broadway shows! While I knew VBT was the best choice for me, I was still scared because it was my first surgery.
But, I also knew time was of the essence because VBT is designed for kids who are still growing. Luckily my bone density scan showed I still qualified.
The surgery lasted about 6 hours. In VBT, they deflate a lung as they arthroscopically enter a few incisions on my side rather than down the back. The best part of being in the hospital was the therapy dogs who helped me recover. They made me laugh and motivated me to get out of bed.
I was in the hospital for 6 days and recovered another week at the Ronald McDonald house before heading home. Healing took about 6 weeks with the most difficult part being my reaction to the pain meds. In mid-January, I headed back to school and I was so excited to be back with my friends. I hadn’t seen them since Thanksgiving. But, not too long after, we all were isolated due to Covid.
For my therapy, I chose to do Scolio-pilates to help strengthen my core. You can see a couple of my scars on my right upper side.
So from the time I discovered I had scoliosis to having surgery was about 4 months. I felt like my whole world changed. But, since time was of the essence for my qualifying for this procedure, I was fortunate to have the surgery when I did as VBT may have been seen as elective surgery and I may not have been able to have it done in time.
My mission to educate others to recognize the signs earlier is so they won’t have to make rushed decisions and hopefully will have more time to explore options.
Unfortunately, so many states elect not to check for scoliosis. But, I’m an example there are gaps in the system that may leave too many kids left unchecked and possibly undiagnosed. And, it’s such a fast and simple thing to check when one knows the signs.
Through Keegan Cares, my mission is to spread awareness of the signs. I spoke in person to 700 7th graders. I mentor kids and families and reach thousands on social media, TV, radio, and podcasts.
Scoliosis left unchecked can continue to curve as one ages possibly affecting internal organs not to mention becoming more painful as the spine twists, rotates, and disfigures.
Scoliosis isn’t stopping me. Since my surgery, I’ve been even more involved in dance, musicals, pageants, and singing.
Contact me to talk with your school, mom group, or media organization.