Just 0.5 percent to 1 percent of the population has the seizure disorder epilepsy, and Marshall Pires of West Orange is one of that small group. He also belongs to an even more select company: epilepsy patients for whom the common treatments never worked. As a result, the 29-year-old—who resides with his parents, Terence and Helen—lived in fear for more than two decades, never knowing when the next seizure might occur.
Most people think of epileptic seizures as causing falling, convulsions and loss of consciousness, but in many cases they produce less dramatic symptoms, like simply “zoning out.” In Pires’ case, they affected his speech and behavior. He’d take up to 15 seconds to respond to a question, and would also act strangely. “We would be driving and he’d try to open the door, or we’d be at the mall and he’d wander away,” says his father. His education suffered, he couldn’t work and he had few personal relationships. He required constant watching by his parents and his twin sister, Olivia, who does not have the condition.
But about four years ago things changed. Pires became one of just five epilepsy patients in New Jersey to enter a clinical trial for the NeuroPace RNS System, a device about the size of a book of matches that is implanted in the skull. It detects abnormal electrical activity in the brain and responds by delivering imperceptible levels of electrical stimulation to normalize brain activity before a person has seizures. Results of the trial showed that, for those who reached two years post implant, 55 percent of the subjects experienced a 50 percent or greater reduction in seizures. Pires has done even better: Although he once suffered seizures almost daily, he hasn’t had a single one now in three years.
Eric Geller, M.D., a neurologist and director of the Level IV –Adult Comprehensive Epilepsy Center at Saint Barnabas Medical Center, calls the device a true breakthrough. He says people in Pires’ predicament, for whom traditional epilepsy treatments don’t work, are “the most challenging and difficult patients we have. They’ve tried basically every medication on the market, including some experimental meds.” At one point Pires even underwent complex brain surgery that sought to remove the dysfunctional part of his brain, and had a vagus nerve stimulator implanted in his chest to stimulate the large nerve that goes to the brain—to no avail. When the NeuroPace device came along, Pires was eager to try it.
“I’ve gone through surgery before,” he says. “I know how it goes.”
The device was implanted by neurosurgeon Werner Doyle, M.D., in October 2009. At first, Pires continued to have seizures. But the device includes a monitor, which looks like a TV remote control that the patient holds to his or her head every day to read the implant’s memory chip and upload the information to the hospital. Over time, as Dr. Geller looked over the data that the device collects on brain-wave activity and changed the settings, those seizures became more infrequent.
“The NeuroPace is like a defibrillator for the brain,” Dr. Geller says. “Everyone’s brain patterns are different, so over time the device will record these brain waves and we fine-tune the settings.” By early 2010, the seizures had stopped. Better still, the constant “brain activity”—the “noise” that his brain couldn’t control—eventually disappeared as well. “Now his EEG readings are almost the same as anyone else’s,” says Terence Pires.
To some extent, that has been a happy surprise to scientists. “There are a lot of things we don’t understand yet as to why people keep getting better,” Dr. Geller says. “Some believe that seizures beget more seizures.” The device seems to stop this self-perpetuating cycle.
“This is a completely different way of treating seizures that has never been available before,” the doctor continues. “Pills go to every part of the body, and they can cause serious side effects. This goes right to the location of the seizure itself.” He thinks the device will be even more effective for more people over time. “When we started the trial, the manufacturer had made educated guesses on what settings to use,” says Dr. Geller. “It worked well, but we will continue to learn how to use it more effectively. And we need to learn how to choose the patients who will respond best to it and how to set the device for each patient. But it’s a big opportunity.”
About one-third of the epilepsy population is resistant to other therapies. “That’s a pretty big number,” he says. “In New Jersey alone, it’s about 30,000 people. So this is going to be a major, major help to a lot of people.”
It has already been that, and more, to Marshall Pires. He now works part time at Jewish Vocational Services of Metro West New Jersey and is working on getting his driver’s license. “I’ve improved a lot,” he says. “I can talk to more people, and it’s much easier. I don’t have to think about how I respond. It just comes.”
His family feels liberated as well. “Both my wife and I were totally geared to Marshall’s seizures,” says Terence Pires. “We had to keep him in sight at all times. Now we don’t even think about it. We don’t worry at the shopping mall, and we have no fear of leaving him anywhere. It has changed everything for him and for us.”