When I was 11, my school nurse gave me my annual checkup, in 6th grade they are also required to check for scoliosis. A few days later I was called into her office and she had me bend forward to look at my back again. I left her office with a letter to give to my parents, and I could tell something was wrong. I found out later that day that she thought I had scoliosis, and that my parents should take me to the doctor for a diagnosis. Later that night I noticed that my shoulder blades were uneven and so were my hips. I freaked out, and my parents assured me that I would be okay, scoliosis is treatable.
I was seen by my pediatrician almost immediately, and I was officially diagnosed a few days later, I didn’t know anything about it. My pediatrician explained to me that scoliosis is a curvature of the spine, it could range anywhere from a few degrees to well over 90º. He sent out x-ray orders for me, and one week later I was sitting in a doctor’s office at Children’s Hospital of Philadelphia (CHOP) being told I was going to need surgery. Bracing wasn’t even an option for me. Between my yearly well-checkup in July of 2014 to November of 2014 my curves progressed from what we assume was between 0º-10º, small enough that my pediatrician wouldn’t notice, to two curves, one 43º and the other 37º.
Within the next month, I had a lot weighing on me. At the time I was terrified of having to get a flu-shot, never mind going through an invasive 9-hour surgery. I didn’t know what to do. However, I didn’t want to sit around and have my parents and doctors decide everything for me; I wanted to be involved. So, I began looking up doctors that could possibly treat me. Between the doctors that I found, and those who had been recommended to us, my family and I visited 5 surgeons in the tri-state area. After a lot of contemplating, we decided that I should be treated by Dr. Amar Samdani at Shriners Hospital for Children in Philadelphia. Dr. Samdani recommended Verbal Body Tethering (VBT), at the time an experimental procedure that would leave me with almost full flexibility.
Five months after my diagnosis, I had my surgery. Dr. Samdani had promised me that I would be able to do just about anything I wanted to after my surgery, and he kept his promise. The night before surgery I was sitting in a chair and by the next day, I was up and walking around. After spending 5 days in the hospital, I went home and continued to recover there. The recovery was the hardest part of my journey. I went from being able to do anything, to having to sit around in at my house and be homeschooled. Soon enough though, I was back doing everything I had done before. After six weeks I was almost 100% normal and able to return to school and participate in any activity, including swimming and volleyball.
Six months after my scoliosis surgery, Dr. Samdani told me I would need an additional surgery. This one would correct my Spondylolisthesis, or a slip-disk. Before my scoliosis procedure, we knew about my slip-disk; however, we didn’t know if I was going to need additional surgery to correct it. It turned out that I did, and this time I would need a mini fusion in the lumbar section of my spine. About two months later, I had surgery to correct my Spondylolisthesis. That recovery was the hardest I’ve went through, which isn’t uncommon for patients that have a fusion in their lower back. But just like my scoliosis surgery, I was up and walking a day later and was able to return to school the following year.
I was able to continue to live my life to the absolute fullest! Six weeks after my surgery, I had no restrictions. Since then, I have gone on many roller coasters, been able to walk around for hours at a time and do just about anything I wanted to do. I started high school two years later and participate in many clubs and other activities with no one being able to tell I have scoliosis or even have had two surgeries.
During one of my routine follow ups three years after my first scoliosis surgery, I was told that I would need a re-correction surgery for my scoliosis. My family and I knew that there was a possibility of this happening, about 3-5% of all scoliosis patients need a recorrection. We elected to re-tether me with Shriners Hospital doing the surgery again. We decided to re-tether because if we fused my spine, I would have only one movable disk in my back.
One year later in June of 2019, I had my third surgery, which went even better than the last two. The next day I was up and walking, more than anyone thought I would be. I was discharged from the hospital 5 days later and within 6 weeks I had fully recovered. I can drive down to Georgia, about a 13-hour ride from my house with no problems. Now, I could do the same any activities as my sister, with almost no problems. Three weeks later I was able to start back at school.
It has been two months since my re-tethering surgery, and I could not have asked for a better recovery. I can sit at school for the entire day with no problems, walk home if I’m feeling up to it, and go to any football games or club activities that I want.
My Shriners team has been amazing! They helped me get me through it all with almost no problems. Since day 1, they knew how they wanted to treat my scoliosis and made sure I understood what was going on every step of the way. Everyone at Shriners, from the receptionist at the front desk, to the x-ray technicians or the doctors and nurses… they always made me feel like I was at home there. They want all their patients to feel like they have a voice in the treatment and a family during and after treatment. I am so thankful for my Shriners Family and everything that they have done for me and my family.
After my surgery I wanted to get involved with spreading awareness with Scoliosis. I realized how lucky I was to have a support system that got me through my diagnosis, surgery and recovery. I want other people to feel that same way, because no one should be alone in their journey with scoliosis. Now after three spinal surgeries, I have decided to work with Shriners’ Hospitals and Setting Scoliosis Straight to help spread awareness of scoliosis and share my story with others because of the monumental impact these two organizations have had on my life and the lives of others. I believe that no matter where you are with your scoliosis, you need someone to be there for you during your diagnosis and treatment. I know firsthand that both of these organizations will be there support you!
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