Traveling with dystonia: Putting a human face on a human disease
Receiving one referral after another, I underwent MRIs, cervical x-rays, and nerve studies. I visited a chiropractor, had ultrasound, and tried both biofeedback and physical therapy. I even went to a sports physiologist. Before long, I began to wonder, Will anyone ever be able to tell me why my neck wants to rotate to the right and why I have pain and spasms?
Being a nurse, I knew I had to be my own best advocate. Because I could no longer keep my head straight without holding my neck, when I worked, I asked physicians on staff to tape my back so I'd have some support. Then, I began to overcompensate with my left arm, so I started to experience shooting, burning pain in that extremity. When I attempted to turn my neck to the left, it would shake, and I had spasms. Though I was scared, I didn't want my family or friends to know the extent of my fear. As an oncology nurse, I'd seen plenty. I felt better being at work, knowing whatever was wrong with me was nothing compared to what my patients were going through.
Downtime was more of a challenge. My car had a manual transmission, which meant I had to hold my neck, shift gears, and steer at the same time. In public, someone would inevitably ask what happened to me or if I'd had surgery or jaw pain. It was difficult to hold my neck and push a grocery cart with one hand, so I started shopping in the middle of the night when there were less people in the store. I stopped going out because I got tired of everyone staring at me. Coping with the day-to-day was becoming increasingly difficult.
My last referral was to a neurologist. I felt it was my final hope. When he said, "How could there be any doubt that you have torticollis?" I started to cry. Now I can be treated and cured, I thought to myself. After 7 long months of worrying and wondering, I had a diagnosis: spasmodic torticollis (ST). At the time, the medical term didn't mean much to me nor did I comprehend how every facet of my life was about to change. All I knew was that I had a name for this "thing" that was twisting my neck and spine and causing my balance to be off.
Soon, however, I would learn that the condition was not that common and there was no cure for it. In fact, more was actually unknown about ST—which is also called cervical dystonia—than understood. Little did I realize the diagnosis I'd anxiously awaited was about to implode my world with all the impact of a meteorite.
What is ST?
A chronic disorder, ST affects the routine aspects of living that people normally take for granted, such as walking, sitting, standing, and eating...or just backing up a vehicle. My initial experience with the condition occurred when I was taking a set of vital signs and noticed as I turned my head to the left, it shook like that of someone with Parkinson's disease, only less prominently. At the time, I thought I had a stiff neck and that it would get better. But it gradually got worse, and the base of my neck became very tender. This is how ST appears at first—very slowly, with pain and stiffness, and then, a rotating/pulling of the neck over a period of time.
Researchers believe cervical dystonia is a neurological illness, originating in the basal ganglia portion of the brain that contributes to certain subconscious aspects of voluntary movement, such as accessory movements or inhibiting tremors. Some think it is an imbalance of acetylcholine, one of the chemicals produced in the basal ganglia. With an overproduction of this neurotransmitter—which travels through the nerve pathways, affecting certain muscles of the neck—increased nerve signals can bring about spasms, causing the head to be pulled in a variety of positions, like laterocollis (sideways toward either shoulder), rotational collis (upright but turned), anterocollis (forward), and retrocollis (backward).
It's said that there is always a silver lining if you look hard enough. And I was definitely searching for one. It seemed I had a combination of rotational collis and laterocollis, which I found to be fortunate in that I didn't know how I would continue nursing with my head tilted backward or forward.