It was the day after Thanksgiving in 2006 and Becky Blair had spent the day helping her daughter move.
But suddenly, the 56-year-old couldn’t remember anything she had done that day, and she kept repeating her words over and over.
Her husband thought she was having a stroke, but she was later diagnosed with epilepsy. It was her first major seizure.
Even after diagnosis, seizure medications didn’t help. So a couple of years later when Blair heard about a nationwide study that involved implanting a device in the brain to stop seizures, she was interested.
“I thought, ‘OK, if I can participate, I can give other people freedom and get mine back. I can do this.’ ”
Blair, who is from Augusta, was one of 191 patients nationwide – 11 from Via Christi – who participated in the study, which led to the Food and Drug Administration approving the device for marketing last November.
Via Christi was the second-largest enroller for the study in the country, said Toni Sadler, physician assistant and clinical research coordinator for Via Christi Research.
The device, which acts as a “pacemaker for the brain,” detects abnormal activity and sends electrical signals to that part of the brain to stop a seizure before it begins, said Sadler, who has spent more than 30 years in the epilepsy field.
Neuropace, the Mountain View, Calif.-based company that produces the device, estimates that more than 400,000 people in the United States could benefit from it.
Epilepsy affects about 2.3 million adults and more than 460,000 children in the U.S., according to the Centers for Disease Control and Prevention. It can be caused by things like strokes, brain tumors, infections and head injury, but often no specific cause can be found.
How it works
Now 63, Blair’s seizures have lessened with the help of the implant, which she and her doctors monitor regularly.
The device, which is about 2 inches long and 1 inch across, is less than a quarter-inch deep and is curved so a surgeon can attach it to the back of the skull under the skin.
Two wires protrude from the device and into the parts of the brain that need electrical stimulation, which vary from person to person, Sadler said.
In February 2009, Blair traveled to Indiana University/Purdue Medical Center in Indianapolis to have the device implanted into her brain.
To collect data on her seizures, she was given a laptop and a “wand” that she could put up to her head to download data from the device to the computer every day. The data was then sent to Neuropace in California.
Blair also kept a journal to log every time she felt a seizure. Doctors would compare the data from the computer and the journal to see how many seizures the device had caught and corrected.
Doctors could also make adjustments to the device and the electrical signals during follow-up visits, allowing for customization for patients.
“I jokingly told them I was a car they were making changes and checking the battery just like a diagnostic,” Blair said.
Patients need to have the battery on the device replaced about every three years, which requires a 45-minute operation.
Brain the ‘final frontier’
All of the patients who were a part of the study at Via Christi have shown improvement, Sadler said.
“We have some patients that have been seizure free,” Sadler said.
So far, 256 people nationwide have been implanted with the device. It’s approved for use in adults over 18 who have not been able to control seizures with at least two drugs.
According to Neuropace, 55 percent of those who participated in the study for more than two years experienced a more than 50 percent reduction in seizures.
“I anticipate this is only the tip of the iceberg with this technology,” Sadler said. “The brain is the most complex portion of the body and the final frontier in medicine. Where the brain is now is where cardiology was 20 or 30 years ago.
“The brain makes up who we are, the psyche. It’s complex and there’s still a lot to learn.”
As the device becomes available on the market, Sadler says Via Christi hopes to continue treating and evaluating patients who receive the implant.
A ‘permanent part of me’
Although Blair’s seizures haven’t completely stopped, she says her life could have been a lot worse had she not had the device implanted. She has been told it catches about half of her seizures.
Despite the implant, Blair still is not allowed to drive with her condition.
“That’s a small price to pay considering I’m highly functional in every other aspect of my life,” she said.
As a study volunteer, she says her contribution will help others with epilepsy.
“I hope it will give them a better chance at a normal life – that they will be able to drive, be more functional, able to work and won’t have to worry about going into public and possibly having a seizure,” Blair said.
“I will always have the device in my head. It is a permanent part of me.”