My Scoliosis Story

5:47:00 PM

Before I get started, I want you to know that my experience with scoliosis is far from typical. While this may be of some help to you if you've been diagnosed with scoliosis, I don't want to scare you! Just know that your experience likely will not be as extensive as mine has been.

I went to the doctor when I was 12 years old for a sports physical. I wanted to be a cheerleader despite being horribly uncoordinated and inflexible. Being a total 12 year old, I had my mom wait in the waiting room. Everything was moving right along until the doctor, who happens to be a family friend of ours, had me bend down to touch my toes. I remember she became sort of quiet, but finished out the physical before asking my mom to join me.

I was sent off to a radiologist and spinal specialist where we learned that I had developed a 49 degree spinal curvature in the one year since my previous physical. Things were clearly progressing at an alarming rate, so there was no option other than surgery.

Photo taken the summer we found my scoliosis

We met with one doctor and I liked him immediately. He received his medical degree from Harvard and had handled many cases like mine. I felt comfortable. My dad asked me if I wanted to keep looking around and I told him I didn’t feel like we needed to. I liked this doctor.

We found my scoliosis in July and I had my surgery that December, right before Christmas. Luckily, I was in year-round middle school with “track-out” periods every quarter that gave me a 3-4 week break so I didn’t have to miss much school.

The surgery was a spinal fusion. I don’t know the exact vertebrae, but I can tell you that my scar stretches from around the base of my neck down to just above my tailbone. In a spinal fusion, the surgeon essentially uses screws and 2 titanium rods to straighten your spine and hold it in place.

Everything I remember about that surgery is in pieces. I remember waking up in searing, overwhelming pain. I remember laying on the stretcher as they rolled me up to the ICU, telling me to brace myself as we went over the small bumps where the flooring changed. I remember seeing my parents for the first time and my dad being so emotional that he could hardly speak.

I was in a reasonably good place right after surgery on account of being heavily, and I mean HEAVILY, doped up. Some Hurricanes hockey players were on the ICU floor and the nurses wanted to know if I would like for them to visit with me. I said, “sure,” and can’t be sure that I was coherent enough to speak to them at all. We did get a photo, though. This was a definite high point.

Things went downhill over the next few days as the pain began to settle in. I was still heavily medicated, but no medication could cover the pain that I felt. A nurse came in and forced me to stand one morning and take a few steps. I honestly didn’t think I could do it and I cried the whole time, but I did it.

Over the 5 or so days I was in the hospital, I kept strange hours. My mom stayed by my side continuously, sleeping on a cot beside my bed. I would wake up in the middle of the night sobbing from the pain and she would stay up with me, reminding me to press my button for pain medicine every 5 minutes. We watched a lot of Chelsea Handler and late night TV. This was also when Jamie Lynn Spears got pregnant, so there was a lot of E! News-related excitement. These were the good memories.

It took about a month for me to feel at least sort of normal. I returned to middle school and went to my follow up appointments. The pain was certainly better than it had been, but it never went away. I echoed this over and over in my follow ups, but was assured that I just had a low pain tolerance and that this was normal.

After repeated complaints, we tried physical therapy and two different forms of bracing. The first brace went around my waist kind of like a corset. The second went around my shoulders to try to hold them back. I had horrible shoulder pain. Sitting in class was nearly impossible. My shoulders would ache and I would sit there, trying to rub my own back and actually focus on what the teacher was saying. I would go home from school every day and immediately get in bed where I’d stay for the rest of the day.

After months of this, my doctor decided that the reason for my pain could be that the rods were “a little too long.” I was a pretty small kid, so this made sense. We scheduled small surgery to have the rods shortened. I was so hopeful that it would solve everything.

It didn’t. The pain didn’t stop. I was told that exercise may help, so I tried out for the track team (which was a HUGE failure, considering I hated to run). Nothing was helping, so after a couple of years had passed my doctor suggested that we take the rods out.

My parents were understandably hesitant because we had been told from the get-go that I would live the rest of my life with the rods in place. The spine fuses into place after a certain amount of time, but the surgery to remove the rods was too painful to go through for no reason. I on the other hand loved the idea. I felt like I could pinpoint that the rods were causing my pain. It seemed simple: if you take out the rods, then you take out the pain.

We went to get a second opinion at UNC Chapel Hill and it was a horrible experience all around. We were stuck in the waiting room for a good hour past our appointment time and when we did get in we met with a very nice medical student. He asked me to tell him my story and after looking at the x-rays told me he thought the doctor would definitely agree-- the rods needed to come out.

The doctor came in in a rush. He briefly asked me about my pain and then promptly shut me down. He didn’t see why I would want to have an elective surgery. To me, the surgery was not elective. It was a chance for me to live my life.

I cried all the way home from Chapel Hill. My parents weren’t comfortable with putting me through another surgery if the second opinion didn’t agree.

My dad got me a gym membership and encouraged me to try to strengthen my muscles to fight through the pain. I went to the gym a minimum of 3 days a week and the pain never stopped. I figured it was a done deal, that this was just how my life would be and I did my best to fight through it and live my life in spite of the daily pain.

Always keeping my hands on my hips to push my shoulders back

A few years passed and I won Miss North Carolina Teen USA in 2013. My posture was horrible and I physically couldn’t push my shoulders back, so I got creative with my posing and kept my hair down. I practiced in the mirror every day to make sure that no one would notice.

I spent the next several months preparing for Miss Teen USA and focusing on bettering every single part of myself. I whitened my teeth, I learned how to do my makeup, I ramped up my gym regimen. But there was nothing I could do to fix my horrible posture.

One night I was laying in bed and I was doing some research on my phone. I stumbled upon a forum talking about spinal fusions that never fused. There was a whole network of people out there dealing with what I was… a fallen shoulder and incredible shoulder pain.

I called my doctor’s office the next day only to find that he was “no longer at their practice.” They wouldn’t tell me where he was.

This was difficult for me because I felt bonded to my doctor after all of the years that I had spent with him. I didn’t want anyone else.

My dad convinced me to try a new doctor in Durham, Dr. Hey. He had his own practice out at Duke and now accepted our insurance (a HUGE plus for a six-figure surgery). Dr. Hey was incredible. He, too, studied at Harvard and was using his practice to eliminate so many of the “bad” parts of medicine. He really makes things all about the patient.

Dr. Hey confirmed what I had thought. My spine had never fused and my spine was curving against all of the metal in my back. My shoulders had developed kyphosis (rounding like a hunchback) because they had no support. The rods were visibly poking up under the skin at my shoulders. “It’s no wonder you’re in pain,” he told me.

It felt so good to be listened to, finally.

I was set to compete at Miss Teen USA in 3 weeks. There was no way I could be recovered from surgery in time, so I had to go as I was. I didn’t mind-- I was just thrilled to know that I would eventually be rid of my problem.

I had my revision surgery that December, 6 years after my first, right before Christmas once again. I was a freshman in college by this point and had officially been dealing with back pain for a third of my life.

This last surgery was the hardest thing that I have ever dealt with in my life. The pain I felt from the first surgery was compounded. Dr. Hey had to go in and unscrew all of the screws and rods from my spine, straighten it, and then put in all new hardware.

The pain was all consuming and there was no relief. I spent the first 4 days in the hospital without any sign that things were getting better.

There was a girl in the next room over who had had a spinal fusion on the same day as me and my parents had walked by and seen her sitting up in a chair, talking to people .When the physical therapist came in to get me up and moving, I knew I couldn’t do it. They rolled me over and grabbed my upper body to try to get me to sit up. The pain came rushing in at a force I didn’t even know was possible. I begged them not to make me stand, but they said I had to. I stood up and the next thing I knew I was falling and everyone was rushing to grab me before I hit the ground.

The pain was so bad that I had fainted. I woke up back in my bed and we decided to try again another day.

The recovery was slow and painful. It was as if I was a newborn again. I relied on my parents to bring me food, to help me stand, to roll me to a more comfortable position. I even had to sit on a chair in the shower while my mom bathed me because I was too weak to lift my arms.

Somehow I did it (through the help of watching every season of Gossip Girl on Netflix in the course of a month.) I made it back to school in January feeling like a completely new person. I had grown 3 solid inches since the surgery.

My experience with scoliosis has really made me value my health. My body has been through some serious trauma from being cut open 3 separate times. I’ve developed both anemia and Celiac Disease in the time since my last surgery, but they’re both manageable.

I decided awhile back that I would never take my health for granted again. I work out religiously 5 days a week, do my best to eat right, and always wear SPF, even in the winter. My body and my health mean too much to me to treat them poorly.

I am also unabashedly proud of my perfect posture! I feel like I deserve it, don’t you agree?! More than anything, I am just so thrilled to live every day without pain.

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