The first time Chelsea Henrie recalls something wasn't right was when she was 16; at breakfast, her brother saw her spooning cereal and milk from her cereal bowl into her shoe.
Chelsea doesn't remember it. It was like sleep walking, she says. Nor does she recall details of any other such episodes that occurred roughly twice monthly for the next three years.
Those episodes were diagnosed as a type of epileptic seizure, characterized by abrupt, short-term episodes of activity for which she had no memory. She never had convulsions. Her doctors said she had temporal lobe epilepsy, a condition in which a temporary disturbance of brain function is caused by abnormal electrical activity in the brain.
The four drugs she took over the years—carbamazepine (Tegretol), zomisamide (Zonegran), lamotrigine (Lamictal), and topiramate (Topamax)—helped only marginally. In addition to the seizures, she also endured side effects of the drugs: weight gain, loss of memory, acne, or rash, depending on which drug she took.
Even with the drugs, she couldn't drive. Friends were either overprotecting her or rejecting her, and increasingly this once-popular Albuquerque, NM, girl retreated to her bedroom.
A neurologist had mentioned surgery early on, but the family rejected it. “Remove a part of my child's brain, you've got to be kidding. No way,” Chelsea's mother, Sandra, recalls her reaction. But with her teenage daughter becoming ever more isolated, the family took a closer look at surgery.
Sandra was persuaded by recent studies showing surgery can be effective when drugs fail. Those studies, reporting that only 8 percent of patients remain seizure-free on drug therapy compared to more than 60 percent who had surgery, are noted in the new guidelines on epilepsy surgery published by the American Academy of Neurology (AAN).
After a weeklong battery of tests, doctors located the part of the brain causing the seizures—the hippocampus of the temporal lobe. They also determined through the tests that removal of that section would not affect her ability to function, and that her brain would be able to compensate. Finally, three years after diagnosis, Chelsea underwent the two-hour procedure at University of California-Los Angeles.
So far, it's been very successful. She has had no seizures in the nearly three years since the operation. Her drugs finally were discontinued last November. Her photographic memory appears to be bouncing back, and her life appears to be thriving again. She took five 50-mile bike rides last summer—“solo,” Chelsea emphasizes. And that's something that would have been unthinkable before surgery, she says.
“And she's herself again,” Sandra Henrie says. “She's like the Chelsea we had before the surgery, before seizures, before the drugs. We finally have her back now six years later.” And she found the surgery so successful, if she had it to do again, she would have done it much sooner.
Why the Delay to Surgery?
Even so, the 22-year-old science education student is now one of the lucky patients who received successful surgery relatively soon after failed drug therapy. A study published in 2003 in the journal Neurology found the average time from diagnosis to surgery was 22 years, and the average time it took from onset to determining that two different drugs didn't work was nine years.
What contributes to the decades of delay is a belief among physicians that surgery is a last resort until all drugs are tried, says Jerome Engel, M.D., Ph.D., a professor of neurology and neurobiology at the David Geffen School of Medicine at the University of California-Los Angeles (UCLA) and director of the UCLA Seizure Disorder Center.
“Now there are so many drugs, it would take a lifetime to prove that none of them work,” Dr. Engel says. Plus, he says, it's unfortunate that physicians and patients are willing to accept drug changes that cause fewer seizures, when the standard should be no seizures and no side effects. Granted, he says, some cases of epilepsy are not amenable to surgical treatment, but those are rare.
People with epilepsy could lead completely normal lives if their seizures could be stopped, Dr. Engel says. “The tragedy is that at epilepsy centers we stop their seizures 20 or 30 years later, but they are still disabled.”
They are disabled after decades of seizures, because by then there is lasting damage to their professional and personal life. In addition, the longer the seizures persist, the more damage they cause to the brain. Frequent seizures can cause progressive memory disturbances as well as the increased risk of sudden unexplained death, and greater risk of accidents, depression, and suicide.
Are You a Candidate for Surgery?
If you are an epilepsy patient, Dr. Engel recommends that you try two drugs as quickly as possible to determine if they can completely stop the seizures without side effects. As soon as you're convinced they don't halt all seizures or the side effects are unacceptable, get referred to an epilepsy center for further evaluation to determine whether surgery or a different drug treatment strategy is appropriate.
Clinical Trial Watch
Enrollment is underway for the Early Randomized Surgical Epilepsy Trial, or ERSET. The study, led by Dr. Engel, involves a total of 200 patients who will be enrolled at 20 epilepsy centers nationwide. The study will evaluate whether early, state-of-the-art intervention, either surgery or medication, works in mesial temporal lobe epilepsy (the most common form of epilepsy), and how these approaches affect quality of life. Enrollment is still underway. Participants must be over 12 years old, with seizures that started recently, or have seizures that are infrequent and have not responded to medication. If you are interested, call (800) 352-9424, or go to the Web site, www.erset.net.
FOR MORE INFORMATION
More information about surgery for epilepsy can be found in the AAN Guideline Summary for Patients and Their Families Treatments: for Patients with Refractory Epilepsy, which can be downloaded from aan.com/professionals/practice/pdfs/patient_ep_treatment_b.pdf. You can also receive a copy by calling (800) 879-1960.