Living with Truncal Dystonia

My Story with Truncal Dystonia

By: Brennyn Marie Torres Carmen

 

Middle school. As soon as you think back to those awkward two years, you cringe. But at least you could walk normal.

It’s 2003 and I’m an 8^th grader. I pride myself on being tough. I love swimming, running, karate and water polo. I challenge the boys at anything and everything, and most of the time, I won.

It was like any other day as my PE class stretched in preparation for a timed mile run. This, of course, was my forte and I could not be more excited and stoked to top my male counterparts … again. While stretching in the lunge position, a kid behind me pushed me into the splits. Fortunately for the kid’s face, I could manage the splits. But when I got up to tackle him, a severe cramp shot through my left leg, leaving me gasping for air. After my friends helped me up, I swallowed my pride and forced myself to ask the PE teacher if I could sit out the run.

I felt fine by the end of that PE period, but things were about to get much worse. Next period, when I walked up to my science teacher's desk to turn in an assignment, my left leg suddenly collapsed. Fear struck me instantly. The whole class stared as I struggled to find my balance and control my left side, but my hip wouldn’t move! My heart raced with devastating embarrassment, the worst feeling for a 8^th grade girl. I’ll never forget that walk back to my desk: the spasms and crippling cramps flowed from my hip to my lower back to just under my left rib cage. All my classmates giggled as they watched me stumble to my seat. 

Brennyn Marie Torres Carmen is too tough to whine, especially if it’s just a pulled muscle. So I didn't tell anyone what was happening. But it never, ever went away. 

After four grueling weeks, I finally gave in and told my mom. Our family doctor told me it was a pulled muscle and to simply give it time. He prescribed me some pain medication and told us to come back if the pain persisted. 

It didn’t just persist, it grew worse, even though I sat out all my sporting events and PE. Imagine the constant disabling surprises I encountered: my torso twitched, my hip jarred and would't pivot, my leg often seized from knee to hip, rendering me incapable of walking mid-stride.

We visited the doctor over and over, fearful that the disease could be linked to leg perthes, arthritis or worse. The medical tests began piling up. I even had femoral hernia surgery because the cramps in my thigh were so intense. One surgeon found several micro-tears in my leg during the surgery. So I got MRIs done – special MRIs – with dye to test my spine and my hip. 

In the mean time, my heavy pain medication made me sick and confused in school, but I was unable to walk without the pills. Friends at school named me "Gimpy" because my walking gait was so funny-looking, even when I was on medication. I basically had no control of my entire left side. Physical therapy became a daily chore, and I had to drop all sports but swimming, and the only stroke I could do was the butterfly.

After five whole years, a third of my life, with no explanations and no diagnosis, we met a spine and rehabilitation doctor who specialized in Dystonia. He performed a test that recorded the spasms and cramps and officially diagnosed me with "Truncal Dystonia". We were so relieved, even though there was no cure. I could finally get the right treatment.

I began receiving Botox shots to my hip right away, which helped immensely at first. I was able to walk around school and swim better, and study in school without the pain medications overtaking my brain. I even placed second in the butterfly in our region's championship swim meet. 

When I left for college later that year, the Botox was weakening in effect. By that time, though, it had spread to my knee and calf. I had to have disability leniency with the university, and it was a tough first two semesters. 

Then, a doctor prescribed me Neurontin. This medication was a miracle worker because the signals from my brain were slowed down and I would have less spasms and contorting. I still take it and it has really allowed me to function well in daily life.

Recently the Dystonia has spread all the way to my neck. My left hand is now affected and it has spread to left my foot. A few months ago, the doctor told me my foot was so badly mashed from years of walking incorrectly that it would need an AFO brace/prosthetic part. I thought this was a bad thing … until I wore it. I could finally walk with my left leg!

Throughout the years I have learned that even though there is no cure for Dystonia, there are small improvements that doctors find. In my daily life, I have found things I could do. I focus on those each and every day, because each day is a battle. I try my best to do my part with helping find a cure and informing people about this disorder. It changed my life, but it changed me in a way that helped me find what truly makes me happy.

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