Thursday, September 28, 2006

Epilepsy-implant test

Janet Bigley just wants to get back to work.

She's hoping the device that was implanted in her head Wednesday will allow that.

Bigley was the first person in Kansas to receive a "brain pacemaker," designed to recognize and stop epileptic seizures in the same way that a cardiac pacemaker keeps a heart beating normally.
Bigley is part of a nationwide trial of the Responsive Neurostimulator, or RNS, made by NeuroPace. The Via Christi Comprehensive Epilepsy Center is one of about 25 sites participating in the trial.

The RNS is implanted under the scalp and connected to wires with electrodes at the end. They're placed on or in the brain, in the area where the seizures are believed to originate. When the RNS detects unusual brain wave activity, it sends electricity through the wires to stop the seizure.

The device has been tested for safety in 65 patients; in this part of the trial, it will be tested for effectiveness in 240 patients. A NeuroPace representative said about 15 patients had received the device to date.

Wednesday's procedure took about five hours and seems to have gone well, said physician Kore Liow, director of the epilepsy program at Via Christi.

Bigley won't know for five months whether her RNS is firing. In the trial, half the patients will have their RNS turned on; half will have it turned off, Liow said. Even her doctors won't know which group Bigley is in. At the end of five months, the device will be turned on if it wasn't already on.

The RNS is designed for people who aren't candidates for epilepsy surgery and who haven't responded to medication.

Liow said an estimated 2.5 million people -- 40,000 of them in Kansas -- have epilepsy. "One out of three epilepsy patients do not respond to medication, so we are looking at potential benefit for a good group of people."

Bigley, who is 54, said she has had epilepsy for about 30 years and has been on any number of medications.

She worked 24 years at Safelite Auto Glass, doing a little bit of everything until the company closed its manufacturing plant in April 2005. When she'd have a seizure there, co-workers would help and watch out for her until the seizure ended.

"They put up with it," she said. "Now I can't find a job because I'm taking 15 pills a day for my seizures, and nobody wants to hire a person who's taking all those pills."

Even with the medication, she was having seizures -- she'd had seven this month before going into the hospital Tuesday. "Sometimes if the weather changes I'll have one. And if I get overtired, I'll have one. Different things set them off."

She compared her seizures to blacking out and losing "a little bit of time." Sometimes, she'd stand and fall over something. Her Pekingese, Coco, used to go to the intercom and bark when she'd have a seizure, but he's getting too old to do that, she said. Her husband, John, fears working in the garage now because he worries something will happen when he's not there.

Bigley was referred to Liow, who told her about the RNS. "They are just hoping this will work," she said.

So is she: "I'm just bored to death sitting at home. I want a job. And if I can get to where I can work again, I'll be glad to. Because it drives me crazy just sitting home."

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