As a 13-year old girl my scoliosis journey was not easy. Instead, it was extremely difficult, both physically and emotionally. Sixteen hours or more of bracing every day impacted every aspect of my life including my relationships with friends, participation in sports, focusing in school, and eating and sleeping. Fortunately, thanks to a lot of effort and determination, and endless advise from Dr. Lonner and support from my family, I was able to avoid surgery and escape all bracing by September 2023.
That September day in 2023 when Dr. Lonner communicated to me that bracing was no longer required was one of the happiest days in my life. I remember saying to myself, I can l finally live a normal life. The pain is over!
So here is my scoliosis journey….
In 2019, at the recommendation of my primary care physician, I had my first appointment with a scoliosis doctor. From September of 2020 to January 2021, my thoracic and lumbar curves unfortunately increased from 18 to 29 degrees and 14 to 21 degrees, respectively. Most problematic was that the doctor feared my curves could materially worsen because the growth predictors indicated significantly more growth to come.
My father, who had also suffered from scoliosis, wanted other opinions and fortunately I ended up with Dr. Lonner. In order to address my increasing curves, including that I also now suffered from a kyphosis curve of 55 degrees, I had no choice but to begin bracing in March, 2021 for 16 hours per day plus daily scoliosis and kyphosis exercises. Sadly, bracing impacted three very important parts of my life: tennis; school; and, friends.
Tennis: Prior to scoliosis bracing, I played tennis tournaments two weekends per month around the United States. My body was free to compete and I loved every aspect of the sport. Training, fitness, and socializing with other tennis players were always fun. However, even though I would not brace while I played tennis or participated in fitness, it had a significant impact on my love for this sport. The brace caused stiffness in my back and made it extremely difficult to compete at the level I desired. It was very upsetting because I had placed so much effort into this sport and it seemed as if the sport was being taken away from me. Also, wearing the brace before and after matches, even though covered by clothes, impacted my desire to socialize with other tennis players. Being different from everyone else was not easy to accept. However, I never gave up and continued to play tournaments throughout my bracing. I eventually recognized that even though competing would be much more difficult, it was ok for me. I could still have fun. I just had to adjust. I just had to compete with the brace too.
School: Beginning in 7th grade, I had to wear my brace to school. My primary objective now was to figure out how to hide my brace from my school friends and other students. I never thought this could ever be my school objective. I thought school was more about learning and having fun with friends. Unfortunately, the brace took control as I spent hour after hour planning to find clothes that would hide my brace and protect me from my greatest fear – other students making fun of me because the brace made me different. The mornings before school were not fun as I would need time to convince myself that my clothes perfectly hid my brace. I also had to adjust because simple things were no longer simple. For example, I would need assistance from the school nurse to put my brace back on after a restroom visit, simple transportation to school was no longer simple, the pressure on by body from the brace was always a distraction and made it more difficult to focus in class (something some teachers never understood), and eating lunch with my brace on was problematic as the brace would impact my eating habits. Fortunately, some of my closest friends were very supportive and over time my fears became less and less. I realized that school could still be fun! I realized it was ok to be different.
Friends: Bracing made it difficult to make new friends. Bracing was always a discussion that I did not want to have because it was unclear how other people would react. Initially, I was very shy around new people. However, over time, similar to tennis, I realized that it was just another element that I had to address head on and no longer wanted the brace to defeat me. I realized that other people really didn’t care that I had this brace attached to my body and were willing to engage me no different than any other person. Ultimately, I survived!
My overall message is that although bracing is not easy, it can be very helpful. I achieved my goal of escaping surgery, and my last 5 day out of brace curves in August, 2023 showed significant improvement. My curves finished at less than 10 degrees for thoracic, less than 20 degrees for lumbar, and a normal for kyphosis.
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