Surgical Procedure Involves Removal of Piece of Brain

By Ann Saul Dudurich
Tribune-Review
Monday, March 7, 2005

For Cindy Shaffer, 1992 was a bad year.

"That's when they took my driver's license," she said. "They might as well have taken my arms and legs."

For most of her 38 years, the nursing student from Mather, Greene County, was at the mercy of debilitating epileptic seizures. She'd tried every conceivable combination of antiepileptic drugs with the hope of leading a normal life.

"I'd bounced around on so many medications, there weren't any medications left to take," Shaffer said. "It got to the point where I was taking 15 pills a day."

But the seizures continued -- sometimes as many as 20 a month. Eventually, she couldn't be left alone. She couldn't attend classes; she couldn't cook a meal; she couldn't swim in the family pool.

"That was the point where I realized it was either surgery and go for it, or no surgery and no life," Shaffer said. She went for it.

The National Institutes of Health reports as many as 2.5 million Americans have been diagnosed with epilepsy, a condition caused by abnormal electrical surges in the brain. While it is estimated nearly 70 percent of those with the disorder can control it through drug therapy, more than 20 percent are limited by seizures that resist medication and threaten independence.

The NIH has launched a study to determine if more epilepsy patients in the United States should seek surgery sooner if drug treatment is ineffective against seizures; but since 2003, the agency has found few takers.

Determined to regain control, Shaffer met with Dr. Jack Wilberger, chairman of the department of neurology at Allegheny General Hospital, in Pittsburgh, and Dr. James Valeriano, director of the hospital's Comprehensive Epilepsy Center. Valeriano suggested a battery of tests to determine whether or not she was a candidate for temporal lobectomy surgery. She was.

On Feb. 23, 2004, Wilberger performed the three-hour procedure, removing a 2 1/2-inch-by-1-inch "chunk" of her left temporal lobe.

The surgery was on Monday; Shaffer was home by Friday. Her last seizure was more than a year ago.

"This is not a new procedure," Wilberger noted. The first such surgery was performed in 1896. It was a success; the patient was rendered seizure-free.

With the introduction of Dilantin in 1938, however, epilepsy surgery fell out of favor. "Dilantin was sort of like the penicillin for epilepsy," Wilberger said. "Everybody was put on it, and it helped a tremendous amount of folks."

Over the next 20 years, a variety of new anti-seizure medicines came through the pipeline. Drug therapy continued as the primary mode of seizure control until the mid-1980s, Wilberger said.

"It was then that, in spite of all the medications and in spite of people being on five or six at a time, there were still a fairly significant number of folks who were disabled from their seizure disorder," he said. "So we saw a resurgence of epilepsy surgery in the '80s and '90s."

Temporal lobectomy surgery is generally "quite effective," Valeriano said. On average, he said, 60-70 percent of patients will become seizure-free. Another 10-15 percent can expect a 75-percent or greater reduction in their seizures.

A detailed work-up -- including history and physical examination, neuroimaging studies, video-EEG monitoring and brain mapping -- are essential in assessing whether or not a patient can have a portion of the brain removed without devastating consequences.

Additionally, a "Wada" test -- administered through a catheter inserted into the carotid artery -- is used to gauge language and memory function on each side of the brain.

Shaffer maintains the Wada test was "worse than the brain surgery."

She concedes it was a necessary evil. "They can't very well put the chunk of your brain back once they take it out," she said, laughing.

Risk of complication during and after surgery is "on the low side," Wilberger said.

The surgery carries a 1 percent risk of infection or blood clot and a 1-2 percent chance of a neurological problem such as stroke or severe memory loss. The hospital performs 30 to 40 temporal lobectomies a year, he said. Brent O'Connell, medical director for Highmark Inc., indicated "the Blues" cover "hospital, surgeon and all of the testing, pre- and post-" associated with the surgery.

"It's just a matter of letting us know why you want to do it and when you want to do it," he said.

Many experts claim the surgery is largely underutilized.

"There seems to be a failure to recognize epilepsy as a serious disorder," said Dr. Jerome Engel, Jr., director of the Seizure Disorder Center at UCLA. "In truth, people die from it."

Dr. Gary W. Mathern, an associate professor of neurosurgery at UCLA, concurs. The increased mortality rate in those with uncontrolled seizures, he said, can be as high as 0.8 percent per patient per year.

"That's epilepsy's dirty little secret," he emphasized. "If you have a 20-year-old who goes through 20 more years of seizures, do the math. You're talking an increased mortality rate of nearly 10 percent by the time they turn 40."

Dr. P. David Adelson, director of pediatric neurotrauma at Children's Hospital of Pittsburgh, said uncontrolled seizures in children can, in time, lead to decline in cognitive function.

"Surgery is actually safer in the long run," said Adelson, who also directs surgical epilepsy at the University of Pittsburgh Epilepsy Center. "Children tend to improve their IQs and tend to be able to develop more normally without seizures."

"Jeremy," who asked that his name not be used, was, at one time, taking 25 pills a day for seizures associated with scar tissue on his brain. Still, he had as many as 10 seizures a day.

"When I'd have a seizure in school, it would drain me," he said. "I'd be so tired, I couldn't stay awake the rest of the day. I'd have to come home and take a nap."

Jeremy had temporal lobectomy surgery in 2001. He was 13.

"It's made a huge difference," said the 17-year-old Butler County student. "I can focus better through the day."

He is seizure-free. His grade point average has gone from a 3.0 to a 4.0.

"It's almost like his life started over," his mother said. "And so did ours."

Why, then, do many neurologists consider surgery only as a last course of treatment?

"Good question," said Dr. Nancy Foldvary, staff neurologist at Cleveland Clinic. "This despite the last 15 years or so of research that clearly shows people with temporal lobe epilepsy who do not respond to medications could be much better served by having surgery."

One such study was conducted by Dr. Samuel Wiebe at the University of Western Ontario, in Canada, in 2001. The study found that 58 percent of surgically treated patients were free of complex partial seizures compared with 8 percent treated with medication.

A similar trial is under way in the United States. The National Institutes of Health's Early Randomized Surgical Epilepsy Trial, or ERSET, is a multicenter study based on the belief that the best treatment for epilepsy is to stop seizures as soon as possible.

Recruitment, though, has been "very slow," said Engel, lead investigator for the trial. "We'd hoped to recruit 200 subjects. The first year is now complete and we've recruited 60. But of those, only 29 have been enrolled after going through the evaluation."

According to Foldvary, principle investigator for Cleveland Clinic's ERSET trial, five participants have been recruited; two have been enrolled. Mathern concedes frustration. Temporal lobectomy surgery, he said, can potentially spare patients unnecessary neurologic and social dysfunction.

"There are limited places in medicine where, as a doctor, I can tell a patient, 'I can cure your disease,'" he said. "Here is one place."

Ann Saul Dudurich can be reached at adudurich@tribweb.com or (724) 837-4378.