My Scoliosis Story
I was officially diagnosed with serve Adolescent Idiopathic Scoliosis (S curve) and Kyphosis at age 11.
I have not always embraced my Scoliosis. Over the many years of trying to fight my way through scoliosis surgeries I began on a path of accepting it. When I first remember the night my Scoliosis was confirmed, I cried myself to sleep. I didn’t want to be different. I just wanted to just normal. I didn’t want a twisted spine, I didn’t want a brace. I just prayed, prayed and prayed it was mistake. But it wasn’t. I had Scoliosis…
When I first heard that I might even have Scoliosis I was so scared. I didn’t know what I was going on or what this new disorder would bring into my life. I was young and didn’t have any interest in figuring out what exactly was wrong with me. I kind of just put it in the back of my mind and forgot all about it until my mother made an appointment with the doctor to figure out. We went to my doctors and they did the standard Scoliosis Screening Test. I started treatment in San Diego, California at USNMC Balboa. I wore a TLSO Brace or Boston Brace for 23 hours a day. I could only take it off for middle school gym class. I felt I could hide my biggest flaw 95% of the time but there is no hiding the giant plastic corset when your changing into sweats. To add to my distress of all the changes, I had to bring my bace to the office because it did not fit into my locker. Of course
everything seems like the end of the world at age 11. Wearing the brace was terrible, but I would wear it forever if it meant I would never have to have surgery, but that was not in the cards for me. After wearing the brace religiously for a year my curve was still progressing. I was very scared when they sent me to have a MRI and a CT Scan. There was no way around it I needed surgery, my spine was so twisted and bent it was crushing my lungs, making it hard to breathe and inching closer to twisting around my heart. My first fusion surgery, with Harrington rods occurred in December 2000. I was in the hospital’s ICU for 2 days and then moved to the regular ward for 4 days. The surgery was deemed as a success. My spine was good for the first few years then I had increased pain which led me back to the doctors where it was discovered that I had pseudarthosis in my spine and my spine was not fully fused. In 2005 I had my second surgery where my rods were removed, but they did not replace my rods right away hoping that the half of my spine that was fused would hold the curve and I would not need a third surgery. However, six months later my curves were getting worse and we planned my third surgery. I was placed in traction and a halo for a week to “stretch me” they replaced my rods and added screws while also preforming a spine lateral release. I gained 3inches in height, and my Kyphosis was almost unnoticeable. I had never seen my spine that straight. I was also given a PIC line, even though infection was never proven. During my many different forms of treatment for My Scoliosis I also had other complications inducing
- Acquired Hip Dysplasia
- Chronic Kidney Stones
- Chronic Osteomyelitis
- Collapsed Lungs
- Femorocetabluar Impingement (FAI)
- Stomach ulcers
- Upper Respiratory Infections
In 2008 my spine was “falling forward” and I had increased pain therefore my rods were removed and it was discovered that infection of Osteomyelitis was present. I was given a PIC line for another year, and braced with a TSLO Brace. In 2009 I had my last surgeries at USCD by Thornton. He did the first surgery to make sure no infection was present even though my tests were clear. Then the next surgery was to replace my rods. I am now fully fused from T3-L3 and nearly two years post opt. Throughout my twisted journey I battled not only medical difficulties, but myself. There was a time in my life when
I was not the positive, upbeat Scoliosis Girl I am today. But through time and healing I have found that I’m so much more then a curved spine. If you have scoliosis, or your child have Scoliosis do not fear, you’re not alone. About 3 out of every 100 people have some form of scoliosis, though for many people it’s not much of a problem. I founded My Scoliosis Story™ because I believe it’s my personal mission to spread awareness about Scoliosis and provided a message of empowerment to all those effected by this disorder.