Mary Ann’s Story: Cervical Dystonia

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Mary Ann, a registered nurse, was the first to notice that her head was tilting ever so slightly to the left. She was able to ignore it for a while, but over time the tilt became more obvious and disfiguring. Friends began to ask what was wrong with her neck. “It affected my job,” Mary Ann recalls. “It was hard for me to drive, because I couldn’t turn my head to the right. I had to hold the steering wheel with my right hand and hold my head straight with my left. It became really challenging.”

Mary Ann saw several doctors, visited a chiropractor and underwent acupuncture. Nothing helped. Eventually a neurologist at the UC Neuroscience Institute diagnosed her condition as cervical dystonia, an uncommon neurological movement disorder involving involuntary muscle contractions that force the neck into abnormal movements or postures. The neurologist advised Mary Ann that injections of botulinum toxin into her neck muscles would effectively treat her discomfort and deformity.

Botulinum toxin comes from a protein derived from the neurotoxin-producing bacterium Clostridium botulinum (pronounced botch-oo-LINE-um), an organism that can cause life-threatening botulism. Although widely used to vanquish wrinkles – it is marketed as Botox, Dysport, Xeomin and Myobloc – Mary Ann was fearful. “I knew it was a toxin, and the thought of having that injected was really, really scary for me,” she says. “I would schedule an appointment with the clinic, cancel it, schedule it, cancel it. I thought I’d somehow manage the dystonia on my own. But it continued to get worse and worse, to the point where I didn’t want to look in the mirror.”

Finally, Mary Ann found a specialist in Chicago who had led studies about botulinum toxin and dystonia. “I went to Chicago to see her, and she looked at my address and said, ‘What are you doing here? You have one of the best in Cincinnati.’ ”

Home again, Mary Ann found the skilled, knowledgeable and compassionate doctor she was looking for in Alberto Espay, MD, MSc. “He was so wonderful, warm and reassuring,” she says. “I needed to have total confidence in my provider, and he’s been that person. Because of his demeanor, I was able to get my first injections. I noticed the results within a week or two, and it totally gave me my life back, because I can do my job, I can go out in public. I look like a, quote, normal person again.”

Mary Ann gets a series of seven or eight injections every 4 months, and it is never easy for her. “I’m always nervous,” she says. “It does hurt. But it’s a small price to pay for having four months of a normal life afterwards. Dr. Espay has been a blessing, a godsend. He saved my life.”

— Cindy Starr

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Hope Story Disclaimer – This story describes an individual patient’s experience. Because every person is unique, individual patients may respond to treatment in different ways. Outcomes are influenced by many factors and may vary from patient to patient.

 

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