Stephen Neiley's first seizure happened when he was 39 years old, while he was having dinner with his family. It would be far from his last.
From then on, for the next 13 years, Neiley, a former San Diego contractor, would have a grand mal seizure -- in which a person loses consciousness and has violent muscle contractions -- every two to three days. He would have petit mal seizures -- in which one seems to freeze for a few seconds -- every other day. Treatment with drugs did not work. He said he had surgery that removed about one-third of his brain tissue, but the seizures continued. Diagnosed with epilepsy, returned to his hometown of Towanda, Pa.
"When it started, I had to give up everything, and I had to move back here," he said. "I had grand mal seizures. I had petit mal seizures. They became out of control."
But Neiley, now 57, says an invasive and risky but promising procedure has given him his life back.
Five years ago, he had a deep brain stimulation device implanted in his head by Dr. Michael Kaplitt at Weill Cornell Medical College in New York. He said the device, normally associated with treatment for Parkinson's disease, has greatly reduced the seizures that had ruled his life.
"I have about one seizure every month now, and that's at night, when I'm asleep," he said. "I have not had one during the day now for over five years."
Today, Kaplitt is part of a large group of researchers announcing the successful results of a double-blind, randomized trial of deep brain stimulation trial for epilepsy. The findings of the trial were published Thursday in the journal Epilepsia.
The trial involved implanting an electrical stimulation device in 110 patients. For the first three months, half had the devices activated. After that period, for the remaining nine months, all patients received mild electrical stimulation. Patients were followed up on for two years.
Researchers report that 54 percent of patients had the frequency of their seizures cut in half, and 14 patients were seizure-free for five months.
This new study "provides very objective support for the idea that this is effective," said Kaplitt. "I think that what this provides is a new type of weapon in the battle against seizures, and it provides legitimate hope to people who may have had no hope."
He said that some patients are able to be treated very effectively with drugs and other more conventional approaches, but "then you have patients whose lives are being devastated. This disease is not being adequately controlled, and their lives are being ruined."
Deep brain stimulation has been previously approved for Parkinson's disease and movement disorders. In addition to epilepsy, it is being considered for depression.
A U.S. Food and Drug Administration advisory panel recommended that the agency approve deep brain stimulation as a treatment for epilepsy on March 12, but a final decision has not been made.
Deep Brain Stimulation: Not For Everyone
While the trial appears promising, doctors caution that deep brain stimulation is not for most people with epilepsy.
Dr. Tallie Baram, a pediatric neurologist and epilepsy researcher at the University of California - Irvine said only a third of people with epilepsy do not respond to medications. In some of those patients, the cause of epilepsy can be explained by a lesion in the brain. If the lesion is in an area that can be operated on, it may be removed and possibly help with the seizures.
For patients who cannot be helped by this, deep brain stimulation becomes a potential option.
"It can be a very terrible disease when it does not respond to medication," said Baram.
And that is when the risk-benefit ratio might change enough to make something like deep brain stimulation worthwhile.
"It is very invasive; you need to go into people's brains and put in wires," she said. There are risks of hemorrhage and infection, although neither occurred during this trial. "It's expensive, it's invasive, it's dangerous long-term, so it's not something you think lightly about."
This study, she said, will give doctors confidence when considering deep brain stimulation as an option for their patients.
"This is a [beautifully] designed study. Clearly this is an invasive procedure, and when implemented it should be done in the very careful manner done here."
Dr. Matt Stead, a pediatric neurologist at the Mayo Clinic, cautioned that for the time being, the treatment should be reserved for patients with the worst cases of untreatable seizures.
"These patients, we really don't have a lot to offer them. If we could decrease their seizures by 50 percent, that's really a big improvement for them."
A Different Life
As for Neiley, he now lives on a 100-acre piece of land along the Susquehanna River. It's a different lifestyle, he said. But now that his seizures are gone, he says he enjoys the change.
"Since the day they did it until today, I'm an entirely different person," he said. "It has solved a lot of problems for me. I have a better life."
He said he would urge other patients who are facing what he faced to explore their options with deep brain stimulation.
"I would tell them to go talk to their doctor about it... I've tried a lot of different things, and this is the best I've had."