The research is persuasive: When drugs don’t completely control epilepsy, surgery often can — and the sooner it’s tried, the better.
Yet while children are going under the knife at younger ages, epilepsy specialists are struggling to get that message to tens of thousands of adult patients.
“Surgery used to be thought of as a last resort. Now we don’t think that anymore,” says Dr. Deborah Holder, a neurologist at Children’s Hospital of Pittsburgh.
“In my perfect world, we’d take care of everybody when they’re young.”
Almost 3 million Americans have epilepsy, periodic electrical storms inside the brain. When circuits misfire fast enough, a seizure results. Many are born with it, but epilepsy can develop at any age, particularly after injury to brain cells such as head trauma, meningitis or a mini-stroke.
Up to 30 percent of patients have intractable epilepsy: Medicines don’t prevent all their seizures, or they cause intolerable side effects. Many are candidates for surgery, cutting out the abnormal brain tissue that sparks seizures. At leading centers, up to 80 percent of surgery recipients become seizure-free, with few complications.
And improved technology is allowing surgeons to better pinpoint the bad spot and remove less brain tissue — half as much as the most common epilepsy surgery removed just a few years ago, says Dr. P. David Adelson, a neurosurgeon at the Pittsburgh children’s hospital.
Between 3,000 and 5,000 of the operations are performed annually, up from 1,500 in the early 1990s, estimates Dr. Robert Gumnit of the University of Minnesota, who heads the National Association of Epilepsy Centers.
However, 100,000 to 150,000 epilepsy sufferers are considered surgery candidates. Most have two to five seizures a year despite medication, and have been told to live with it — instead of being sent to an epilepsy center that specializes in complicated cases, says a frustrated Gumnit.
That may not sound like many seizures, but it means the people can’t drive or perform certain jobs.
“It’s not the burning issue it ought to be,” adds Dr. Jerome Engel of the University of California, Los Angeles.
There is a major push to get youngsters, especially those with severe epilepsy, to the operating room sooner.
Protecting the brain's development
Why? If two medications fail to control epilepsy — at any age — there’s only a slight chance a third will help, recent research shows. Worse, years of seizures can harm a child’s development, sometimes permanently.
A Cleveland Clinic study in the journal Pediatrics this month is among the first to examine surgery on children younger than 3, and found that even among patients that young, earlier surgery predicted a better chance of normal development.
Consider 2½-year-old Alex Seman of Wampum, Pa. He has a condition called tuberous sclerosis that triggers epilepsy through abnormal brain growths. Despite four medicines, his arms and legs would flail with seizures several times a day. Brain monitoring uncovered several dozen mini-seizures daily, too, presumably the reason his language skills were about a year delayed.
“It’s like listening to your cell phone with static coming through,” says Pittsburgh’s Adelson, who operated on Alex earlier this month. “The goal was to cure it before he even knew he had it.”
Weeks after doctors removed a chunk of his brain, Alex is seizure-free so far, and his parents say his perky personality has reappeared.
Not everyone is eligible for surgery. Seizures may originate in a spot that can’t be removed safely. Their options:
- Major studies are beginning to see if implanting an electrode that emits a low-level electrical current could zap the bad brain tissue and stop seizures as they form. Called deep-brain stimulation, it’s already used to control tremors in Parkinson’s disease.
- Doctors also sometimes implant a “vagus nerve stimulator,” which delivers tiny shocks to a nerve in the neck that in turn signals the brain. It doesn’t cure epilepsy like surgery can, but can reduce some patients’ seizures.
- Also under study is beaming the seizure spot with radiation, using a technique called the Gamma Knife.
Janet Rickey of Arlington, Va., chose standard surgery even though doctors warned the problem spot was right next to the brain region that controls movement of her left side. But at age 47, seizures that began at 7 were steadily worsening, and drug after drug failed. When testing recorded 120 full-blown or mini-seizures in a week, surgeons at Georgetown University Hospital agreed to try.
Rickey did wake up with partial paralysis; it took a month to move her left leg. Three months later, she still walks with a cane, but is gleeful that her seizures have plummeted.
“Every day I could count on having a seizure, and now I can count on them stopping,” she says.