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vertebral body tethering

Alyssa Edwards

How Perspective Changes a Thunderstorm

I used to be afraid of thunderstorms. The loud, unsettling noises and bright flashes terrified my three-year-old self. Then, one stormy night, my dad took me by the hand and started walking towards the door. I reluctantly followed. We sat in front of the glass door watching the lightning strike and listening to the thunder that quickly followed. I was mesmerized by what had once scared me, and surely enough, they became one of my favorite things. I genuinely looked forward to thunderstorms. Just one night changed my perspective on thunderstorms, and likewise, one experience can change your perspective on life.

I stood in front of the mirror, gazing at the body I saw standing before me. I ran my fingers along my spine as it curved from one side of my body to the other. I pushed against my ribs, judging the disproportionate points that caused one rib to stick out farther than the other. At 13 years old, the self-judgement became a habitual routine. I loathed the disorder that caused my body to look and feel so abnormal. I loathed the nights spent crying because the muscle pain in my back and hips was too intense. I loathed the countless amount of doctors’ appointments and the constant feeling of being let down by my own body. Suddenly, I was three years old again and my scoliosis seemed like the thunderstorm I was once so afraid of.

I was just ten years old when I was diagnosed with adolescent idiopathic scoliosis. At this point, my curves had just barely met the standards to be considered scoliosis and so for the next few years, my scoliosis was not monitored. Fast forward to eighth grade, my scoliosis had rapidly progressed and was diagnosed as severe.

Numerous specialists reviewed my case, but the outcome was always the same: improvements from bracing were not hopeful, and surgery would be my only option. Every time I heard those words a bit of hope was stolen from me. I wrestled with the idea of surgery for months. I was fighting a battle against my own body and I felt defeated. The storm I was facing had barely started, and I felt as though I had already succumbed to my fears. But I knew I still had a long road ahead of me and continuing on with this outlook would only strengthen the unsettling feeling of defeat. It was because of this realization that I kept pushing through, praying and hoping the storm would soon end. On June 23, 2017, Dr. Baron Lonner performed the VBT procedure, tethering my T-11 to L-3. I changed in two ways on this day: the first being I now had a 6-inch scar running down my side and five screws imbedded in my vertebral column, and the second being I had a new perspective on my life. On June 23, 2017, I opened my eyes to look for the good in bad situations.

I am still fighting my scoliosis, but I am no longer afraid of it. Similar to how the stormy night spent with my dad changed my outlook on storms, I have chosen to overlook my fears and apply a new perspective to my scoliosis. It was because of my scoliosis that I learned the key to living the fullest life I possibly could was accepting the good with the bad. My pain and fear have taught me something comfort never could. Since my surgery in June, my thoracic curve has continued to progress, and my tether has broken. Due to these unforeseen circumstances, I will undergo a thoracic fusion in the near future, along with a VBT correction in my lumbar spine. It is unknown what my future will hold, but I have grown to learn that my storm is a blessing enriched with many lessons and growth opportunities. My scoliosis has impacted my life for the better, and has led me to become the person I am today.

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Kaitlyn Boyle

Hi! I’m Kaitlyn

I was diagnosed with scoliosis at the age of 9 at a pediatrician well visit.  The doctor found that I had a lumbar curve in the high 20’s as well as a thoracic curve in the low 20’s.  I immediately began wearing a Providence brace at night.  At first it was a fight, but once I got more comfortable with it I was very compliant in wearing it to bed without too much fuss.  We visited the orthopedic doctor every four months and were continually told that “everything looked good”, so we felt confident that I was going to get through this without much worry.

Fast forward two years. I started complaining that my brace hurt and I didn’t want to wear it.  I had been wearing the same brace the whole time so we made an appointment earlier than planned to see about a new brace.  I was shocked when the doctor told me that my curve was now 41 on the top and had actually been getting worse over the last year! We decided to switch to a Boston brace so that it could better address my high curve, but I would have to wear it pretty much full time.

I wore the brace to school once and came back refusing to ever endure that again.  I said I couldn’t even go to the bathroom without help and I was NOT going to do this!  We watched videos online of girls showing how to do cute outfits and we did a ton of shopping hoping to find ways to make this acceptable to me, but I was quickly pulling away from social activities and friends and changing from the happy energetic girl that I was once was. I worried I was going to have to give up volleyball, a sport I loved, and I refused to spend the night with friends or participate in activities because I was embarrassed about my shoulder blade sticking out.  

My mom spent hours pouring over the internet and ruling out several of my options, we decided to visit Shriners in Philadelphia to talk to Dr. Cahill about VBT.  He felt I was a perfect candidate and we jumped in head first without looking back.  My thoracic curve was at 46 degrees on the day of surgery and lumbar was still in the high 20’s as it had always been.  Dr. Cahill tethered the top of my spine and left the bottom alone. Six weeks later I was back playing volleyball.

Since then, my life has been a series of amazing events that I think all would have never happened if I’d stuck fighting the brace! I won a Disney essay contest with a story I wrote about my VBT experience and won premium annual Disney passes for the family for a year.  I had an opportunity to speak in Washington DC at the FDA spinal devices meeting about my outcome and experience with VBT.

I made my club’s national volleyball team and at the national tournament, I was scouted by an agent for a major modeling agency and I have been modeling for the last four years. I also write a monthly column for a modeling magazine.

I went from 5’4 on the day or surgery to 5’11 now, five years later and my spine is almost completely straight! It has been inspired me to want to become a doctor. I have been working hard to graduate from high school a year early.  I have been admitted to the University of Central Florida for the fall, skipping my senior year in high school.  I hope to become a radiologist.

My life is so much different today than what I feared it would be five or six years ago.  I had visions of a lifelong deformity and pain.  Instead I have experienced humbling support from friends and family and unbelievable gifts of opportunity that would have never been presented to me if I had chosen a different path.  We are ever grateful for the surgeons who have the passion and vision to offer something new and better for their patients. 

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