I was living in Okinawa, Japan when I was diagnosis with scoliosis in the 5th grade. I wasn’t really concerned about what the future might hold regarding this diagnosis. It all seemed pretty low key. I had a few x-rays of my spine and saw a specialist who told us the curve was rather small and to seek out a doctor once we arrived at our next location in Miami, FL. The doctor in Okinawa had interned with a spine specialist in Miami named Dr. Harry Schufflebarger and recommended we see him. About six months later, in Sixth Grade, we had moved to Miami, FL where I saw Dr. Schufflebarger for the first time to keep tabs on my curves. Quickly, things went from low key to full on. I had an “S” curve which had grown since my first x-rays and now a brace was prescribed for 16 hours out of the day. During the 2016 Christmas break I received what I thought was one of the worst gifts a girl could ask for, a confining piece of plastic, my first scoliosis brace which was supposed to slow down the curve progression. During this time, I was (and still am) a very active teenager. I was playing the flute in my middle school band, swimming, dancing, playing volleyball, hosting neighborhood events for children, and volunteering in the Pre-School department at my church. Slowing down was not on my agenda at all. I felt like my whole world was shattered now that I had to wear this brace. I felt like I wouldn’t be able to do the things I loved. Wearing my brace made me feel self-conscious and insecure. I was afraid my friends and classmates would treat me differently, think I was not capable of the same things they were, or that they needed to be careful when I was with them; all because of my brace. Looking back people probably did not treat me as differently as I imagined, but I wasn’t treated completely normal either. Sure, I was not able to do things exactly like I was before wearing a brace, but with the encouragement of family and friends I made the proper adjustments and overcame the friction.
After wearing a brace for two and a half years my curves continued to worsen and it was decided that spinal fusion was a very real option. My parents always involved me in the discussions with my doctor and encouraged me to be an active participant in my health. I decided that I felt it was time to close the door on scoliosis. My parents could not believe my calm and “chill” attitude about moving forward with the spinal fusion surgery. To be honest, I was not worried about the surgery and decided the tough recovery I would face might be the easiest part of this journey for me.
I had my surgery on August 5, 2019 at Nicklaus Children’s Hospital in Miami, FL with Dr. Schufflebarger. He was awesome and even provided my Dad with pictures of the surgery which I still have not looked at. Week 1 was pretty miserable, my back felt like it weighed a million pounds, my ribs constantly hurt ( 4 ribs had an inch cut off to use for the fusing), and breathing was painful. I didn’t want to get up and walk, but I knew it was the only way to continue to progress the healing and my physical therapist did a phenomenal job of encouraging me on our walks around the hospital. Over the course of the next couple of weeks my parents did many mid-night walks and late night NetFlix binges with me. I made incredible improvements and at my three-week Post-Op appointment Dr. Schufflebarger said I looked like I was healing great. I had grown almost 2.5 inches and look down at my mom now! I was also allowed to get in the pool and ocean to chill out, which is huge for me because I live on Miami Beach and love the water. This has been a long journey with more to go, but I have gained more self-confidence and strength after seeing what I am truly capable of enduring.
I would like to share three tips for anyone going through scoliosis. First, keep good friends close, you need encouragement and support throughout this whole ordeal. Second, get to know someone who has been through scoliosis or the even the surgery themselves. It is huge. It just brings a lot of positive energy and confidence for you and your family. I had three people who gave me wonderful advice and which helped ease me and my family concerns with the back surgery. Third, be positive and have faith that there is a plan and purpose in this situation. You will be changed in countless ways you did not even think possible. For example, you will have a new-found strength and confidence in yourself. Initially, the surgery and recovery will be a challenge, as well as a mental and physical struggle, but the results have been worth it!
Read more patient stories like this from around the world.
Post a comment