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Patient Stories

Sophia Perez

My name is Sophia Perez and I had spinal fusion surgery on June 13, 2018. I’d like to say my life changed that day. I was diagnosed when I went for a well check up at the age of 8 with my pediatrician, Dr. Mark Ginsburg. I went for an x-ray, and it was confirmed that I had scoliosis. I didn’t know what that meant, but I do remember my mother’s look of concern. I thought I had something similar to a cold and it would eventually go away. Little did I know that this would never be the story. My mother took me to Nicklaus Children’s hospital to see a specialist and that is when I met Dr. Harry Shufflebarger. I’d like to say that he is the best doctor any one could have!

Dr. Shufflebarger advised us that I would need to be monitored every year with an x-ray. I was cool with that, and continued my life as an elementary school kid and swimming, which was my passion. It was like that until the summer before I entered 5th grade, a few months before my 10th birthday that in my yearly routine check-up my degrees had changed past the 25 degrees. This meant bracing. I was terrified at the thought that I had to wear a plastic brace that covered me from just under my shoulder to my hip area. I cried all the way home. I would wear this brace for 10 to 12 hours in the evening. I hid this from my friends, I stopped sleepovers and only a select few were able to see me with my brace. Every travel swim met, I’d have to bring my brace with me, and I made sure no one saw this plastic thing I learned to hate. As my next two years progressed, so did the amount of time I had to wear my brace. I hated the sticky feeling of having to wear this brace, especially in the hot Florida weather. I developed rashes, and the sweating under the brace made me hate it even more. I also started doing concave exercises and visiting a chiropractor to see if my progression would slow down. Nothing worked and my visits went from yearly, to every six months to every 3 months. This really scared me! The thought of avoiding surgery was looking more and more grim. The only bright light for me was that my swimming had taken off, and it was the only thing that kept me positive and going. 

October 3rd, 2017 I had a checkup with Dr. Shufflebarger. I had a routine: go in, get the x-ray, see Dr. Shufflebarger, degrees went up slightly, come back in three months. This was not the case on this check-up. I did my x-ray, but when Dr. Shufflebarger came in, I knew by the look on his face that the news was grim. His exact words, “it is highly unlikely that Sophia can avoid surgery.” I could not believe what he said. I began to cry; he asked me why I was crying. I told him that I was a good swimmer, and I wanted to be able to swim and compete and go to college and swim collegiately. He looked right into my eyes and said, “Who said you can’t? You will be able to do it all. The butterfly might be harder, but you can.” I met nurse Michelle Burnstein that day. She would become our best friend in this journey. I left there unbelievably sad. I didn’t even go to practice that day. I couldn’t. I thought about my swimming, and the years I had put into this sport and how I didn’t think it was possible. I asked my family to not tell anyone about my upcoming surgery. I didn’t want people to feel sorry for me, or pity me.

So I went to practice every day and worked hard. I wore the brace, but only to sleep, and we decided that my degrees, although it was over the 50%, it could wait for the summer. In January my mother and Michelle set up a date. June 13, 2018. That was my great-grandmother’s birthday, and I knew she’d be there as my guardian angel. I swam at my championship meet in March like it was my last one for a long time. I didn’t know how long my recovery would be. The short course season ended, and around that time I had decided to tell my swim friends and coaches. I knew that they were hoping for the best, but they too were unsure about my recovery. I began the long course season in April, and swam three meets. As school was ending, I knew that the surgery was approaching. I didn’t want school to end. I went to my last check up before surgery on May 3rd of 2018. It was a long three-hour appointment in which Michelle explained what my surgery pre/ during/ and post most would look like. I was photographed and I asked two questions. My only two questions were: “When can I start swimming?” and “will I ever do the butterfly again?” The butterfly was my best stroke and it scared me that I could never do it again. I began drinking folic acid and iron vitamins, and two weeks before my surgery my dad and I donated blood for my surgery. I took it like a champ. I didn’t want to miss practice because in my eyes if I missed any practice it would make me slower.

My mom received a phone call from Michelle the first week of June, asking if I could get a CT scan of my spine. I was worried and thought that there was something else happening. I went the day before my last long course meet and in my mind maybe ever. I didn’t want to miss practice, so we went the first day of my two-day summer vacation to get my scan done. My curve was in the 60’s! I could not believe it. The Saturday before my surgery my parents took me to Universal so I could ride the Hulk one last time. It was the best weekend. On Tuesday, the very last day of practice, I said my goodbyes. I remember getting picked up and keeping myself from breaking down because I wanted to be at the pool, and not going to the hospital to have surgery. We registered and that began the longest night of my life. My dad stayed with me, and the next morning my brother, sister, mom, dad, and my godmother were they’re waiting for me to be wheeled to the surgical/prep room. I went with mom and dad, and at that point said goodbye to my sister and brother. In the prep room, I saw Dr. Shufflebarger and Michelle. They made me feel very relaxed and sure that this was for my own good. I am not going to lie, I was nervous. The doctors gave me something to relax me and that is when I was wheeled out to the actual surgical room. I saw Dr. Shufflebarger wash his hands and the next time I woke up I was in my room.

It was tough. Recovery has not been easy. I cannot explain the pain I endured the first few weeks. I hated having to walk, sit up, eating the first few days. I kept listening to my inner voice that told me that this would end soon. I have to say that it was hard. I needed help going to the bathroom, lying down, sitting up you name it, I needed help with it. As the long summer days came, all my friends were having fun, and I was recovering. I had to walk every 2 hours to help with my recovery. Everyone in my family took turns. I got to know the neighborhood and my neighbor’s very well. I had many visitors in that time, my pain was still there, but everyday got better. Like the words of my 5th grade teacher I was a warrior.  I could not wait for Dr. Shufflebarger to give the ok to get into the water, and sure enough in the month of July 6 weeks later he gave the ok. I was able to get in the water and just float. It was great. I started to have friends come over, and hang out in the pool.

Dr. Shufflebarger gave us the o.k. to get back to the pool on September 13, 2018. No diving or flip turns, but I could kick. I remember getting back, and my head coach was very nervous. I jumped into my own lane and was able to kick and it felt different than before. I had to get used to my body altogether. I was used to swimming in a twisted body, my hard ware was holding my spine together and my hips were straight and my legs were the same length. I felt my insides and there times that I got scared. Mom made sure to call Michelle several times, to only hear “it is normal”. I still had doubts that my swimming would be like it used to be. I was slower, my legs hurt when I kicked, I was afraid to be hit or kicked in my back by anther swimmer. However, in October I made sure to go to practice and try harder. I had specifically picked the beginning of June to be able to attend the Championship meet in Gainesville on the first weekend of December. I was given the all clear 7 days before that meet to do flip turns and dive off the block. I remember how excited I was to let my coach know, and how nervous I was when I did my first jump and flip. I was ready. I went with my team, Gulliver Swim Club to the meet. My swims were surprisingly not too off from my best times. The last night I got a best time in the 100 free! It was all I needed to believe that this surgery was not going to impede me from getting my ultimate goal: swimming collegiately, getting my best times, sectionals, futures cuts etc… Nothing would be impossible! I could do it!

I worked hard training for the Championship in March, the same one I didn’t know I would swim in. I was entered into 7 events that I had qualified for prior to surgery. Would I be able to swim close to those times? I went into that meet hoping to be close to my best times, after all it had been 9 months since surgery and I was going to swim the 200 fly and 100 fly, which Dr. Shufflebarger had said would be tough to do again. March 15,16,17 of 2019 was the junior Olympics. I swam 5 out of 7 best times and received three AAA times, which means I did very well. I couldn’t believe that my hard work had gotten me this far. The road to recovery has not been easy. I still get stares and “ill” or “aww “when people see my scar. I see it like my battle wound. People used to get grossed out when they would see my spine all twisted when I’d bend before I would jump into the water and now they are horrified to see my scar. I have learned that my scar identifies who I am. It was meant for me to have this surgery, to explain to other athletes like me that you can do it. It will not be easy, and you will be told that you cannot do it, but that should light a flame in you to believe in yourself and do it.

I am only 14 years old, and I have experienced something that most people will have never experienced. I knew the day I left Nicklaus Children’s hospital that I wanted to help other patients that were going to endure the same operation as mine. I have always worn crazy looking socks at my championship meets; it is a good luck charm for me. I wore them the day of my surgery and for the first six weeks of my surgery. I have decided that I want to collect crazy socks and I hope to reach 1,000 followers for my cause Curvescanbecured. Be assured that you are not alone, scoliosis affects many young children, and there is nothing that you could have done different to get this disease. Know that you were chosen to be a scolio warrior!

Sincerely,
Sophia Perez

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