Patient Stories

April 16, 2019: the afternoon that—at the time—I thought had turned my life completely upside down.

This particular appointment with Dr. Peter Newton at Rady Children’s Hospital was the third yearly follow-up since I was formally diagnosed with adolescent idiopathic scoliosis in 2016. My x-rays revealed that my curvature had progressed at every follow-up since my diagnosis, but it was at this appointment where I was shared some extremely disheartening news: I needed spinal fusion surgery. I stared blankly at my x-ray on the computer screen as the orthopedic surgeon and nurse explained to my parents and I that my curvature had progressed to the point where a brace wasn’t viable anymore and because of the rate my curvature is growing, it’s certain that I would need a spinal fusion at some point in my life. My parents, my orthopedic surgeon, and my nurse were met with a fifteen-year-old boy’s emotionless face who said he understood the benefits and risks a spinal fusion entailed and the magnitude of the situation. In reality, I was shell-shocked, devastated by the fact that I would need such an invasive and life-changing procedure to ensure my healthy lifestyle. On the car ride home, all I could do was clutch my printed x-ray and stare at it. As my external body struggled to function, my mind was racing, filled with questions and feeling a variety of emotions: Could I die during surgery? How big is my scar going to be? Why couldn’t I just be normal like everyone else? Why me? That afternoon of the appointment shattered my fifteen year old self, but little did I know that it also marked the start of an incredible journey of perseverance, fortitude, and self-awareness.

In the months following, the thought of receiving a spinal fusion never left my head. The possibility of surgery terrified me. My family and I were presented with a heavy decision that afternoon: when should I get my spinal fusion? Deep down, I knew I had to get the surgery sooner than later. After all, my life would get busier as I graduated high school and started college, meaning I would have to sacrifice more for the sake of my recovery the longer I waited. Additionally, the pandemic temporarily halted all of my extracurriculars and left me with more time on my hands than I could imagine. So, after spending weeks deliberating and researching the pros and cons to a spinal fusion, my family and I scheduled my spinal fusion for April 5, 2021.

My emotions rose as surgery day got closer. A part of me was feeling nervous: about a week before the surgery, my left leg started going numb and I developed symptoms of urinary retention. I obtained an emergent MRI to see if I was developing a spinal cord compression because of my rapidly progressing scoliosis. If my surgery wasn’t already scheduled a few days after my symptoms emerged, my family and I would have been forced to consider an emergency spinal fusion—this was nerve-wracking. Another part of me, however, was feeling excited: a substantial amount of planning and researching led to the decision to get surgery, and I couldn’t wait until the stresses of my impending surgery were finally lifted off me. A friend who I met through the track team, who also had a spinal fusion herself, helped me sort through all of these emotions. We organized a phone call the weekend before my spinal fusion and she gave me valuable pointers to make my recovery easier. This was the first time where I first realized the benefits of being open with my diagnosis—it was comforting and reassuring to know that I wasn’t alone.

On surgery day, I walked into the hospital knowing that the journey ahead of me was going to be hard, but I felt confident and ready to conquer it. I woke up in the recovery room five hours after I was taken to the OR. My 51° lumbar curve was now fused with two titanium rods and eleven screws! I was in and out of sleep due to the anesthesia, but all I wanted to do when I first woke up was look at my x-ray to see my new spine. As soon as I saw it, I let out a breath of relief: my surgery was finally over! Anxious to start walking again, I asked the nurse if I could get out of bed, but I was instructed to just lay in my bed and rest. I spent the rest of the day happily on the phone with friends and family and spending time with my parents in the recovery room, still heavily influenced by the pain medication I was on.

I didn’t realize how much of my freedom I would need to regain until the night after my surgery, when I first started to wean off of my painkillers. The next day, 24 hours after I was wheeled into the OR, the physical therapist walked in and took me on my first walk. With her help, I slowly learned how to sit up in bed, stand, and take my first steps with my new back. Every movement and footstep was met with intense pain, but I was determined to build my physical endurance again. Slowly but surely, I walked out of my room and to the stadiometer right outside my door to measure my height. I had grown an inch taller! Just walking outside my room had drained my energy, so we then walked back inside and I fell back asleep. My physical therapist kept coming in for the next couple days, and we slowly worked on rebuilding my physical endurance for the next three days by walking one, two, and finally three laps around the hospital floor until I was finally discharged—it was easy to stay motivated with her support. I excitedly exited the hospital feeling proud of the progress that I had made to rebuild my physical endurance.

My recovery at home was a difficult test of my mental fortitude. When I first arrived at home, I broke down and started crying, because I quickly realized that I still hadn’t gained a lot of my autonomy back. On top of my parents having to dress me, I had to use a shower chair and a toilet seat riser. I couldn’t even sleep in my own room upstairs because I was still too weak to climb the stairs. Discouraged and temporarily defeated, I felt uncomfortable within my own home. I then viewed my situation through an optimistic lens: if I was able to build my endurance in the hospital, then I most certainly can continue to do so at home, but I would need to persevere and stay mentally strong. As the days passed, I slowly started to regain my autonomy by completing small but progressively more difficult tasks, and I started to feel more secure in my home. One day, I walked outside and watered my radish plants by myself. The next day, I climbed all of our seventeen stairs and slept in my room. The day after that, I showered and dressed myself on my own. Throughout my first couple of weeks at home, I still felt sore, and I was scared that I was going to overexert myself and undo all the progress that I made. So, I paid close attention to my body while still pushing myself to do more and more every day. I would consistently go on walks at the beach with my family every day, and before I knew it, I would be able to walk one, two, and even three miles on my own! It became a habit to complete tasks that required more physical endurance and mental fortitude every day, and it sparked my confidence each time I was successful because I knew I was healing. Three weeks post-op, I returned to school full-time, ecstatic to finally see my friends and teachers again. Two months post-op, I confidently walked across the stage and graduated high school. Three months post-op, I comfortably sat on a plane for six hours and had a blast in Hawaii (and I got to show off my foot-long scar!). Four months post-op, I excitedly moved five-hundred miles away from home and started my freshman year of college.

The terrified and defeated fifteen year old boy in the examination room had no idea that he would gain so much more than eleven screws and two titanium rods—my surgery and recovery came with numerous valuable lessons and newfound realizations that I couldn’t be more grateful for. It wasn’t until my recovery where I realized how invaluable it is to have bodily autonomy and independence. Going to the bathroom, sitting in a chair, and putting on clothes unassisted are all things that I now recognize as a privilege, and I’m incredibly thankful that my spinal fusion didn’t take my autonomy away. Working towards regaining my bodily autonomy during my recovery also allowed me to recognize the harmonious relationship between physical and mental health, and how my perseverance and fortitude to maintain both before and after my surgery resulted in a successful healing process. Most of all, I realized the benefits of having a support system throughout my journey—scoliosis is not an endeavor that anyone should go through alone. Receiving a diagnosis at a young age is definitely not the most ideal news to receive, but having friends and family that supported me through my recovery by calling me the weekend before surgery, sending flowers and balloons to my hospital room, and keeping me company during the nights comforted me and made my recovery easier.

I do not regret my choice to receive a spinal fusion. Yes, the surgery and recovery was the hardest endeavor of my life thus far, but I can confidently say it’s also been the most rewarding and eye-opening journey. I can proudly say that I made it through spinal fusion surgery! Nevertheless, my journey with scoliosis isn’t over—it’s only transitioned from focusing on my own recovery to helping others with their journeys with scoliosis. My spinal fusion will forever be a defining factor of my human experience, and it feels empowering to be able to share my story to help others. My journey—from my initial diagnosis in 2016, my fusion in 2021, to finally sharing my story—has truly impacted my life for the better.