My Journey From Diagnosis to Scoliosis Surgery as a Young Teenager
It all started when my mother took a piece of loose-leaf paper, held it against my back, and used a fluorescent yellow highlighter to trace my spine. “Your spine is literally curving,” she said to me.
“No, it isn’t. That’s impossible. The doctor said it’s because my left lung doesn’t breathe well, so my right side is more developed. That’s why I have a shoulder hump,” I argued back. But the infamous thin, yellow line on the wide-ruled, lined paper proved me otherwise.
When my cardiologist, of all people, first said the word “scoliosis,” I had never heard the term before. What did it even mean? Was it “bad?” What was “wrong” with me? What was going to happen to me? My cardiologist recommended I see my pediatrician for confirmation of the diagnosis, but he gave me a referral to an orthopedic surgeon at Johns Hopkins, where I already regularly received care for a congenital heart defect. I don’t remember much else about that day, but I do remember my cardiologist mentioning the possibility of surgery if my scoliosis progressed enough.
“I’m sure the orthopedic surgeon won’t force you to go through surgery unless it’s necessary. You’ve already been through enough in 13 years,” my mother said on the drive home from the annual cardiology checkup. I don’t know if she truly believed that statement or if she was trying to comfort me. Either way, I believed her at the time.
I was officially diagnosed with scoliosis in August, 2008, though I don’t think I doubted it at that point. I had already received confirmation from my cardiologist, my pediatrician, and my orthopedic surgeon. My X-rays showed I had a 30-degree curvature in my lower thoracic spine, which was considered moderate scoliosis.
When I was informed of this fact, I figured the next step would be a back brace. I had prepared myself for that treatment protocol. I wasn’t prepared for what my surgeon actually said: “You’ll definitely need surgery.”
I was both surprised and upset by his admission. “What about a back brace?” my mother asked, as she was probably thinking the same thing as me.
“In my experience, back braces don’t really work, and they just postpone the inevitable,” he said.
I was saddened by his lack of willingness to try a back brace to stabilize the curvature, but looking back on it now, I appreciate his candor about their supposed usefulness — or lack of usefulness — and that he didn’t force me to wear an uncomfortable, sweaty back brace for 20 hours a day during my adolescent years. Being the meticulous student I was, my first thoughts were both wondering when the surgery would be scheduled and hoping that I could wait until the following summer to undergo it, as I was starting my final year at my private, Catholic Pre-K-8 school. I was already facing a major procedure; surely I wouldn’t have to miss school on top of it.
Due to the nature of my condition, I was self-conscious about my curved spine, resulting in a crooked posture during my early teen years. My so-called “friends” bullied me because of my spine, and I often came home crying about how much I hated school because I was being teased about something I couldn’t control. Since I would have to have the spinal fusion surgery before the school year was out, my mother decided to take matters into her own hands.
It was seventh period on a Friday afternoon in January 2009. My seventh-period class was usually either art or religion class; but today, seventh period would be spent in neither art nor religion. Instead, seventh period would be spent in the school library — since it was one of the few rooms large enough to hold the entire eighth-grade class but was also small enough to allow us to have an intimate discussion. I didn’t want to face the rest of my classmates, but my mother insisted I be present for the moment when she told the class about my upcoming surgery, so I chose to sit in the far corner of the library near a dusty bookshelf that held various biographies. My mother explained everything about my scoliosis to the class: my diagnosis, the fact that I would miss a significant amount of school time for surgery, and how much aid I would need once I returned to classes. The recovery would be quite restrictive in regards to normal functioning in a school environment — or any environment for that matter: I wouldn’t be allowed to lift anything over three to five pounds even though my orange-and-white flower-printed backpack often weighed over 10 pounds. I also wouldn’t be allowed to participate in gym classes or field day — not being allowed to participate in my final field day at my school bothered me more than not being allowed to participate in gym. Overall, I would need a lot of time to physically recover from this surgery.
I tried to live as normal of a life as possible before my surgery. I attended classes and dances and rehearsals for the annual musical in between pre-op appointments, X-ray procedures, and pre-surgery blood draws. The cast party for the end of the spring musical, “Godspell,” was the Friday before my surgery. The party didn’t feel like much of a celebration, and I had such an insignificant part in the play that I could have dropped out and nobody would have noticed my absence. Lots of cast members, mostly my fellow eighth-graders, were crying — and by crying, I mean sobbing — over the end of their final performance of middle school. I felt disconnected for most of the party as I had the cast and crew sign my program and wished my classmates and teachers farewell for the time being. I had bigger worries on my mind than the end of a grade school musical.
The big day finally arrived: March 30, 2009. I woke up early to be at Johns Hopkins Hospital on time, which was 6:00 a.m. I didn’t need any reminders — the date and time had been inked on the kitchen calendar since it had been scheduled back in December. After I had showered, grabbed my belongings, and kissed my dog goodbye, my parents and I left for Hopkins.
As we drove to the hospital, my level of nerves began to increase drastically, but I ignored them for the time being. I still didn’t want to believe what would be happening in about an hour-and-a-half. The ride to the hospital was easily one of the longest car rides of my life, even though we live only 22 minutes from Johns Hopkins. We arrived at the hospital and walked down the long corridors where we were directed to pre-op. I secretly wished we could have gone through the domed Billings Administration Building where a marble statue of Jesus Christ, or “The Divine Healer,” stands so I could rub His foot before my surgery. Alas, the Children’s Center was nowhere near the Billings Administration Building.
After I arrived at the pediatric pre-op area, I did all of the things the staff asked me to do: I changed into a hospital gown, I had various lab tests taken, and I discussed the anesthesia procedure and the operation itself with my surgical team. Members of the team told me what to expect when I woke up, and then one member said he would be back in a few minutes. At this point, I knew the inevitable was approaching, but I still didn’t want to believe I needed to have surgery. Maybe my orthopedic surgeon would come back to the pre-op room and tell me I didn’t need the surgery done after all. Despite these thoughts, though, I knew I was just kidding myself.
Mom put on the sterile clothes she was required to wear: a gown, a hair net, surgical slippers, and a surgical mask. I only needed the hair net and surgical slippers. When one of the team members arrived and said it was time to go in, I kissed Dad, Grandma, and Pop Pop goodbye and left the pre-op area with Mom. It was time for the moment I had been dreading since December. It was “go time.”
As Mom, the member of my surgical team, and I walked to the operating room, I began to get really nervous. I don’t really know why I walked into the operating room and wasn’t wheeled in on a stretcher, but so be it. I swear my heart rate went up with each step and each passing moment. The journey seemed endless as we wandered through the maze of hallways, and just when I believed we had reached our destination, we turned another corner to prove me wrong. Finally, we reached the operating room where my surgery would take place.
As I walked into the operating room, I saw my surgeon reviewing my X-rays. I hopped up onto the surgery table, hoping not to get a glimpse of the sharp scalpels and saws. As the operating team hooked me up to various monitors and machines, I held my mom’s hand tightly and began to cry. That moment was when it finally hit me: I was having surgery, and there was nothing I could do to stop it from happening. All I could do at that moment was pray and cry. Once the anesthesiologist put the anesthesia mask on me, I started to inhale my vanilla-scented, anesthesia air, thanks to some Lip Smacker Chapstick smeared on the inside of the mask. I began to worry that I was not falling asleep. Mom told me to relax and not to worry. Those few minutes are all I remember about the operating room.
When I woke up in the ICU, I felt a sharp, painful, soreness wash over my body like a massive tidal wave. Though I was still groggy from the anesthesia, I immediately wanted to know where my family was. My parents came in to see me, but they could not stay long because they needed to get home to care for our dog, so my grandparents spent most of that initial day with me. I don’t remember the rest of the surgery day because I was sleeping on-and-off through it.
The next day, I was moved into a regular hospital room. This room was where most of my visitors came and where much of my early recovery took place. When I was transferred from the ICU to my hospital room, all I remember was a groggy, heavily medicated ride down long hallways from one room to another. When I started my physical therapy the following day and sat up for the first time, I felt dizzy and nauseous, and I was in a tremendous amount of pain. My first task was to slowly walk over to the chair in my room so I could sit up for a few hours. One minute seemed like one hour or even one whole day. Every day afterward, the physical therapist would work with me so I could relearn how to walk and climb stairs. These tasks, which were once so natural to me, were suddenly far more difficult. It took all of my energy to simply get up and go to the bathroom, sit up in a chair, or climb stairs. My recovery was not a pleasant experience, and I learned to never take my mobility or flexibility for granted.
After six long days in the hospital, I finally got to go home on April 4, 2009. The bumpy car ride out of Baltimore was very painful on my back, mostly because I was stubborn and did not take my pain medication like I was instructed to do prior to being released from the hospital. I arrived at my house, where I continued to recover and improve. My recovery was a long, slow process, and I felt like it would never end.
Now almost 13 years later, this memory sticks with me because I overcame a great fear — something I did not want to happen. I learned not to take simple things for granted because of my scoliosis surgery. After facing and recovering from this surgery, I realized I can do anything and to never give up hope no matter how difficult things seem to be.
Getty image by monkeybusinessimages.