Cut to a new life
Brain surgery gives hope to sufferers of a common form of epilepsy
By Mariko Thompson
Before the epileptic seizure broke in her brain like an electrical storm, Laura Atchley felt a chill run up her spine and down her arms. She was cooking. A frying pan was heating on the gas stove.
Somewhere between the warning aura and the onset of the seizure, Atchley turned off the stove. She doesn't remember doing it. But when she regained consciousness, the gas burner was out and she had a third-degree burn on her index finger from the hot pan.
Diagnosed with epilepsy at age 10, Atchley is among the 30 percent of sufferers for whom medications fail. Over the last 10 years, the seizures had become alarmingly frequent. In Southern California, where the car is equated with freedom, the 39-year-old Antelope Valley resident couldn't drive. At Edwards Air Force Base, where she works as a secretary, the area around her desk was padded.
Tired of the physical and psychological toll, Atchley chose to have brain surgery at UCLA Medical Center earlier this year.
Surgery has proven to be both safe and effective for people suffering from a common form of epilepsy that emanates from the mesial temporal lobe, an area of the brain involved in memory. Among patients who can't control the seizures through medication, doctors estimate that up to 200,000 would be strong candidates for the surgery. Yet no more than 3,000 have the operation every year. About 2.3 million Americans have been diagnosed with epilepsy, according to the Epilepsy Foundation.
People suffer for an average of 22 years before turning to surgery, said Dr. Jerome Engel Jr., director of the UCLA Seizure Disorder Center and a professor of neurology.
"They're in the prime of life, going a decade or longer with a debilitating condition," agreed Dr. Gregory L. Barkley, medical director of the Comprehensive Epilepsy Program at Henry Ford Hospital in Detroit. "It's a terrible disorder to have because of the unpredictability."
Engel cited lack of aggressive treatment by doctors and neurologists, patients' fear of surgery, and the high cost of the surgery as reasons factoring into the delay. According to the Epilepsy Foundation, the cost of evaluation and surgery can range from $50,000 to $200,000. But epilepsy, too, carries a steep price tag. Researchers estimate epilepsy costs in the United States reach $12.5 billion annually.
Brain surgery has been a treatment option for decades. But in the last 20 years, the strides in neuroimaging have allowed doctors to map the brain and better evaluate where epileptic seizures originate. Brain surgery, of course, is never risk-free. Risks include death, stroke, infection and damage to nerves or blood vessels. For this type of epilepsy surgery, the risk of complications is less than 1 percent, said Dr. Itzhak Fried, professor of neurosurgery at the UCLA David Geffen School of Medicine.
For many patients, the threat of death and injury posed by continued seizures outweighs the risks inherent in surgery, Engel said. Besides health concerns, epilepsy has profound psychological and social effects. A recent Dutch study found that epilepsy in childhood affected the ability to learn, which resulted in lower levels of education. People with epilepsy also were less likely to marry or have children, the study found.
For the operation, Fried makes an incision shaped like a question mark near the ear. He removes a piece of tissue about an inch and a half in length in the area called the hippocampus, which plays a role in forming memories.
"If patients have epilepsy that begins early, the memory function may shift to the other side of brain," Engel explained. "If it comes later, they can have severe memory disturbances from seizures. When you take it out, the memory gets better."
Most patients are able to get out of bed the following day and return home after four or five days. More than 75 percent of patients remain free of seizures as a result of surgery, Fried said.
Age is no barrier for surgical treatment. At Detroit's Henry Ford Hospital, doctors have performed epilepsy surgery on an 11-month-old, said Barkley, also the chairman-elect of the Epilepsy Foundation advisory board.
Typically, patients try two to four major anticonvulsant drugs before surgery becomes an alternative. Even at the most rapid pace, that process takes at least two years, Barkley said. Presurgical evaluation can range from several months to a year.
"You're realistically talking about at least three years of uncontrolled seizures before you get surgery as it is today under an optimistic scenario," Barkley said.
Since most patients with uncontrolled seizures go far longer than that, researchers want to find out if brain surgery should be used for early intervention. UCLA is one of 19 sites participating in a National Institutes of Health-funded study designed to answer that question.
The Early Randomized Surgical Epilepsy Trial enrolls patients over the age of 12 who have suffered disabling seizures for less than two consecutive years. Half of the participants will undergo surgery, the other half will receive aggressive drug treatment. The researchers will compare the progress of both groups over two years.
"We'll see which of the two is most able to produce no seizures without side effects," Engel said.
Atchley, who is not participating in the trial, got to the point where she experienced several small seizures a week and at least one major seizure a month. Her husband, Doug, supported her decision to have surgery.
"I was ready for it," she said. "I needed an answer. By this time, I was very tired and run down."
Fried and his team performed the surgery in early August. Five weeks later, Atchley returned to work. She still experiences the warning chill, something doctors say will fade over time. But she has not had a seizure.
"There's a big difference," said Doug. "She's more open, more outgoing, and has more energy. Her personality is coming out more."
During her recovery, Atchley picked up a Danielle Steele novel and read more than 50 pages. Without seizures harming her short-term memory, she was able to continue reading the next day and recall what had happened before. Now that she's rediscovered reading, she thinks about going to college.
"Some people take that for granted," she said. "Now I can relax in the park, put a book in my hand and just read."
For more information ...
Early Randomized Surgical Epilepsy Trial (ERSET) at UCLA: (800) 352-9424, (310) 267-2880 or www.erset.net.
Epilepsy Foundation: (800) 332-1000 or www.epilepsyfoundation.org
Original source: http://www.dailynews.com