For years, a small but vocal group of doctors has argued that surgery may be the best way to treat some cases of epilepsy. But the procedure is drastic -- requiring the removal of a walnut-sized piece of the brain -- and many other experts have remained uneasy about the idea.
The arguments on each side are so striking that patients are left wondering whether to opt for the expensive and somewhat risky surgery or to take medications that may not control their symptoms, possibly allowing their condition to deteriorate.
Enter the federal government. By funding a major study comparing surgery with medication, the National Institute of Neurological Disorders and Stroke hopes to settle the matter.
The Early Randomized Surgical Epilepsy Trial will enroll 200 patients, age 12 and older, with mesial temporal lobe epilepsy, the most common form of the disorder. They will either undergo surgery or receive drug therapy.
“A lot of people in the medical community have had a lingering skepticism about whether surgery works because there had never been a randomized, controlled trial,” says Dr. Jerome Engel Jr., a professor of neurology and neurobiology at the David Geffen School of Medicine at UCLA and principal investigator for the study.
Surgery proponents got a boost two years ago when Canadian researchers released the first randomized, controlled study concluding that surgery is more effective than drugs in some cases and no longer should be considered a treatment of last resort. The U.S. research project will go beyond that study to try to determine when medication should be abandoned and surgery considered.
That question is critical, says Engel, because doctors now believe that patients can suffer irreversible damage and death from uncontrolled seizures. Often, Engel says, medications work initially to control seizures, but become less effective in late adolescence and early adulthood. Mesial temporal lobe epilepsy usually begins in late childhood.
“The longer you have seizures, the more disabling they are and the more likely you are to develop irreversible, adverse consequences,” such as learning and behavior problems, Engel says. “The question is, how early do you do surgery? We’d like to do it as early as we can to give these people the best chance for a good quality of life.”
People who opt for surgery typically only do so after experiencing many years of uncontrollable symptoms, he says. The medication arm of the study will provide patients with the best drugs available, says Engel, which is important because many patients may be getting drugs that are not the most suitable, that don’t completely control their symptoms, or that cause side effects. There are more than 20 anti-epileptic drugs available.
In general, people whose seizures are controlled by medications without side effects are not candidates for surgery. In surgery for mesial temporal lobe epilepsy, the piece of the brain’s temporal lobe that is producing the seizures is removed.
Fears that removing the tissue will cause problems with memory, movement or other brain functions are largely unfounded, Engel says, because “that area is damaged, so it’s not functioning anyway. Removing it won’t usually cause additional neurological damage.”
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Epilepsy is a disorder in which clusters of nerve cells trigger intermittent bursts of abnormal electrical activity in the brain.
This activity can cause seizures, convulsions, muscle spasms or loss of consciousness.
Seizures can vary in duration and severity.
About 2.3 million Americans have epilepsy. It typically first occurs in childhood. Rates of epilepsy are higher in non-whites.
Epilepsy can be caused by head injuries, strokes or infections.
But in most cases, doctors are unable to determine the cause.