Doctors now say that surgery should be a first choice for these patients, not a last resort. In fact, experts say those who wait are missing out on life, The Early Show National Correspondent Hattie Kauffman reports.
Chelsea Henrie, 21, doesn't take anything for granted. Simple everyday things such as riding a bike, making breakfast or fixing her hair were once impossible for her to perform.
Growing up, Chelsea's parents say she was a normal kid. But at age 16, her bizarre behavior began.
"[Chelsea was] pouring milk in her shoe," says her father, Marshall Henrie. "The very next day, she was playing backgammon with me, and moving the piece and [then] froze."
Chelsea was frozen in a seizure. For 10 to 30 seconds, she would blank out, and then she would be disoriented for up to an hour afterward.
"This isn't the flu, this isn't a cold, this isn't something mom can fix," says Chelsea's mother, Sandy Henrie.
Chelsea was diagnosed with temporal lobe epilepsy. Medication proved ineffective in stopping her seizures. And leaving her alone, even for just a moment, was dangerous.
"I was curling my hair," says Chelsea. "I must have had a seizure and held it against my chin."
"She burned her face so bad that we had to go to a plastic surgeon," says Sandy.
At school, Chelsea's teenage friends didn't know how to react to her epilepsy.
"They would either avoid me, and I'd never see them again, or they'd become very overprotective," says Chelsea. "It's the most painful thing to have social rejection."
Chelsea faced a lifetime of constantly being watched, of never having any time to herself. Her parents learned about a surgery that could cure her, but they were nervous.
"You know, they might never make it off the table," says her mother. "They might not have any memories left whatsoever … [But] you have to give your child a chance at a normal life."
UCLA is one of 20 hospitals now doing clinical trials on early surgical intervention for epilepsy.
"Epilepsy surgery is arguably the most underutilized accepted medical treatment today," says UCLA neurologist Dr. Jerome Engel, Chelsea's surgeon.
Engel says that too often, patients wait decades before trying the operation.
"You can rescue them from a lifetime of disability and its not often as physicians we have an opportunity to do that," says Engel.
Yet, only 1 percent of epilepsy patients who could benefit from surgery ever try it.
"I get to have a life, a life not dependent on other people," says Chelsea.
For the first time, she can get a driver's license. But that's not all. She's gone rock climbing without the fear of seizures -- reclaiming the outdoors.
The biggest moment in Chelsea 's recovery came early this year, when she moved into her own apartment. It had been almost two years since her last seizure.
"We waited three years with Chelsea," says her father Marshall. "Many people have waited 20 years and have suffered and lost half of their lives."
According to Engel, the success rate for epilepsy surgery is 80 percent. Neurologists say the surgery is only recommended for patients whose seizures are not controlled by medication such as in Chelsea's case.
"Finally, I know what it is to live a normal life," she says.
For more information about these clinical trials, go to ERSET.net