BY TIM BONFIELD
The Cincinnati Enquirer
At first glance, it's just a silver metal disk with a plastic-coated wire sticking out.
Epilepsy expert Dr. Richard Strawsburg warns that the vagus nerve stiumlator is not a "miracle cure." But it's been a godsend for Mary Beth Brierly and her parents, Robert and Dianna.
(Tony Jones photo)
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But for 20-year-old Mary Beth Brierly, of Independence, Ky., that plain-looking device has been the first thing to make a real difference in her 15-year battle with epilepsy.
The manufacturer, Houston-based Cyberonics Inc., calls it a "pacemaker for the brain." Doctors call it a vagus nerve stimulator. The Brierly family simply calls it "wonderful."
"I can't say enough about it. We've tried every medicine available in the United States. Nothing helped," said Mary Beth's mother, Dianna Brierly. "But now she's having fewer seizures. She's more alert. She's doing so many more things. Her teachers, who haven't seen her over the summer, notice the change."
On June 18, Mary Beth became the second of six Tristate patients so far to receive the vagus nerve stimulator. She is the first to show strong progress from a treatment that doctors say can take 18 months to show results. As such, Mary Beth's case is stirring interest among several thousand Tristate residents who also have had poor luck controlling their epileptic seizures.
"This is not a miracle cure. It won't work for every patient. But for many patients with poor seizure control, this may be a tremendous thing," said Dr. Richard Strawsburg, pediatric neurologist and a leading epilepsy expert at Children's Hospital Medical Center.
Epilepsy strikes about 2 percent of the U.S. population, including about 36,000 Tristate residents. A variety of medications, surgery and special diets helps about 80 percent of all epileptics control their seizures. But until recently, there hasn't been much good news for that remaining 20 percent, which includes about 7,200 Greater Cincinnati residents.
"We're very, very excited about our clients having another alternative to look at," said Margie Frommeyer, executive director of the Epilepsy Council of Greater Cincinnati. "I've been in this field for 20 years and never before have so many options been available."
Past research indicates the vagus nerve stimulator can cut seizures byhalf for 28 percent to 35 percent of patients. Mary Beth has been one of the successes.
For Mary Beth, the seizures started when she was 5 years old, not long after an ear infection. They quickly multiplied to a near-constant state.
Seizures strong enough to knock her down happened 50 to 60 times a month. Every day, she would suffer 40, 50, sometimes more than 100 small seizures her family calls "staring spells."
"She was confused all the time. She would get lost in familiar places. She wouldn't be able to remember familiar words or carry out simple tasks," Mrs. Brierly said.
Like most people with epilepsy, Mary Beth shows no visible signs of illness. She has curly brown hair and fashionable wire-rimmed glasses. Yet epilepsy has warped her life.
Her falls have caused bruises, cuts, a dislocated shoulder and enough back injuries to aggravate, perhaps even cause, arthritis in her spine.
The seizures have caused speech and learning disabilities that have slowed her education and limited her social life.
Outings that many people take for granted were ordeals for Mary Beth. She often avoided going out from fear of having a seizure in public. She cannot drive, and most likely never will.
But now, Mary Beth is beginning to make plans for things that once seemed impossible.
Last week, Mary Beth started her senior year at Scott High School. She's looking forward to getting her senior picture and going to her first high school dance. Come spring, she fully expects to be wearing a cap and gown.
Six months ago, the idea of holding any kind of job seemed unthinkable. Now, Mary Beth is part of a job training program, thinking about working in a restaurant or maybe a day care.
"Employment is such an important issue for people with epilepsy," Ms. Frommeyer said. "If a device like this works for a person, it can be the difference between a job or a lifetime of dependence on the social welfare system."
For Mary Beth's parents, who smiled and joked throughout an interview with the Enquirer, it was obvious a terrible burden has begun to lift.
Over the years, they have put their only child through at least nine different medications, including some experimental drugs with nasty side effects. They tried a special diet. They considered, then ruled out, brain surgery.
They've been to the hospital's neurology suite so often they say their insurance plan probably helped build the place.
Now, finally, something is making a difference. Mary Beth still has seizures, but she already has a better life and a brighter future.
"When she was 9, one of her doctors told us we should take her off all her medicines and let things run their course," Mrs. Brierly said. "That wasn't one of her doctors at Children's Hospital, thank God."
First of longer-lasting pacemakers used in Tristate