Seizure free: Brain surgery can help those with epilepsy, as a last resort

Click Here to Recommend Story View larger image Dr. Paul D. Lyons, right, shows physician's assistant Patricia Willauer the portion of the brain where epilepsy is centered. Dennis Grundman/Daily View larger image Tilelli prepares for brain surgery at Winchester Medical Center in June. Courtesy photo View larger image John Tilelli, 50, of Stephens City, was first diagnosed with epilepsy when he was 21. Courtesy photo

By Linwood Outlaw III -- loutlaw@nvdaily.com

WINCHESTER -- Life was never quite the same for John Tilelli after his 21st birthday.

Around that time, Tilelli -- now 50 and living in Stephens City -- was eating Thanksgiving dinner with his family when he had his first seizure, which he says was a "scary" moment for everyone in the household.

"I lost a sense of where I was [and] what was going on," Tilelli recalled. "[It was] an intense state of confusion, and I couldn't function. I couldn't do anything or make sense of anything that was going on."

Tilelli went to see a neurologist in New York, and was later diagnosed with epilepsy. Over the years, he tried various anti-epileptic drugs to control his seizures, including Dilantin and Carbatrol. Initially, Tilelli's seizures stayed under control for a number of years. Eventually, though, he started having breakthrough seizures.

Then there was October 2008, when Tilelli said he had a "whopper of a seizure" that lasted 40 minutes while driving home from work.

"I had not had a seizure like that in the whole history of my epilepsy," Tilelli said. "I totaled my car, hit two other cars ... I, to this day, don't know what happened [in the crash]. I can't tell you anything about it."

After the accident, he gave some serious consideration to having brain surgery, a last resort for patients who have little or no success with anti-epileptic drugs.

Tilelli had the operation in June. He says since the surgery he has been seizure-free.

Brain surgeries and other remedies for coping with epilepsy was the theme of a recent seminar hosted by Valley Health neurologists and surgeons at the Wellness and Fitness Center in Winchester. The seminar was among many events being held around the country to educate people about the condition in recognition of National Epilepsy Awareness Month, observed each November.

Epilepsy, considered the third-most common neurological disorder in the United States, affects more than 2 million Americans. Nearly 150,000 new cases of the condition will be diagnosed in the country this year, according to the Centers for Disease Control and Prevention.

Although some techniques are more recent, surgical removal of seizure-producing areas of the brain has been practiced for more than 50 years, according to The Epilepsy Foundation of America. The most common form of epilepsy surgery is a lobectomy, or cortical resection, during which all or part of a right or left lobe is removed.

Patients with intractable epilepsy -- a condition that doesn't respond well to treatment -- could benefit most from such surgical procedures, said Paul D. Lyons, an epileptologist with Valley Health.

"Once your epilepsy is classified as intractable, the medications have about a 5 percent chance of working, or a 95 percent chance of failing, which doesn't sound terribly good," Lyons said.

Valley Health has done eight epilepsy surgeries since it first began performing them in July 2008, Lyons said. Each of the patients who underwent surgery -- including Tilelli -- are now seizure-free, he said. Brain surgery is usually considered when patients have exhausted standard medicines without success, or often have seizures in one part of the brain, particularly in an area that can be removed without damaging things like memory, speech and eyesight. In Tilelli's case, all of his seizures happened on the right side of his brain and all of his normal brain functioning was on the left side.

Although most surgical patients are adults, children with severe seizures also undergo the procedure. Surgery can be largely successful for treating epilepsy. But patients must first complete a series of tests before doctors recommend it.

Lyons said doctors must first determine whether a patient actually has epilepsy, as some people might be experiencing episodes that are not produced by excessive electrical discharge in the brain. Lyons said it must also be verified whether patients are using the right types of medications. In some cases, surgeries also are limited to certain types of seizures.

Presurgical evaluations, meanwhile, include an extensive review of one's physical and neurological history. Sometimes, electrodes have to be put in a patient's head to find seizure areas deep within the brain. The number of required tests usually depends on the type of surgery being sought. Some experts say the chances of people living both seizure- and medication-free at some point after surgery are good, though there are some who may have to keep using medication or do not benefit from surgery at all.

So far, it's been good for Tilelli, who has been married for more than 20 years and has two sons. Coping with epilepsy hasn't been easy, he says, but he has had a great support system.

"One thing that I found with my epilepsy is that I needed to have some sense of normalcy. I needed something to make me normal," said Tilelli, who works for a networking technologies distribution company in Chantilly. "I had my work to help me feel normal. Lots of people with epilepsy don't have that luxury."

Things are going much smoother for Tilelli these days.

"My energy level is amazing now that I feel better and have gotten physically better from the surgery," he said. "I'm a better husband, I think. And, my kids are getting used to a dad that's seizure-free. They didn't know any other dad. It's weird for them."