Zac Vanni

Brain Surgery Sets Teen Free from Seizures

By Sierra Tzoore

Zac Vanni was always conscious during his epileptic seizures, but finds it hard to explain what they felt like. "First I'd feel a tingling down my arm, and that's not so bad," he says. "But then my right arm and hand would start seizing. Finally, after a big jerk it would fall limp for a minute or two."

The 16-year-old had his first seizure at age two. A brain scan revealed abnormalities in the left side of his brain, the source of his epilepsy. In epilepsy, the nerve cells in the brain misfire, causing a seizure which is often described as an 'electrical storm in the brain.' There are several different types of seizures. The one Zac had is called a myoclonic seizure and causes the body or part of the body to jolt as if receiving an electric shock.

The neurologists who examined Zac as a toddler said they thought they could treat him successfully with medication — which they did. Once on medication, Zac went years without seizures, with the exception of when, at age 8, his doctor suggested they try weaning him off medication. After a full-blown seizure on the soccer field, Zac went back on medication. As his father Rich Vanni recalls, "Then everything was great until he was 13 and a half."

As Zac hit puberty, the seizures returned. His doctors upped his medication, which temporarily held them at bay. But by the end of eighth grade Zac was having seizures every morning, half an hour after waking up. After a seizure he would sleep. He missed a lot of school and on the days he did go, Rich would drive him in late, his son fast asleep in the passenger seat. Zac grew anxious that he would have a seizure in school.

The Vannis began home schooling Zac. They also began working with a series of pediatricians and neurologists, searching for a solution. They bumped up his medication, they tried new ones — nothing worked.

At that point they switched pediatricians. After listening to Zac's story, his new pediatrician told the Vannis he needed to make a few phone calls. Then he referred them to UCSF Benioff Children's Hospital. "We were lucky enough to get to Dr. Sullivan and his team, and it was a godsend," says Rich. "We were at our wit's end."

Pediatric neurologist Dr. Joseph Sullivan is the director of the UCSF Pediatric Epilepsy Center. Like the center he leads, Sullivan treats all kids with epilepsy but specializes in helping the 10 to 20 percent of cases that don't respond to medication.

After examining and testing Zac, Sullivan told the family there were no new medications on the horizon that could help Zac. Instead, he recommended a two-stage surgery. In the first stage, Dr. Nalin Gupta, UCSF's chief of pediatric neurosurgery, would implant a grid of electrodes over Zac's brain surface. Then Zac would stay in the hospital for several days while his medical team monitored his brain activity. In the second stage, Gupta would remove as much as possible of the part of Zac's brain responsible for his seizures.

Monitoring is the key to planning the second stage of surgery. "First we do passive monitoring to record the child's typical seizures. This lets us pinpoint where they're starting," explains Sullivan. "Then we use the grid to do functional mapping of important areas of the brain, such as motor or speech areas." By determining which area is sparking the seizures, and which are important for movement, sensation or speech, the surgeon can remove as much as possible of the problem area while leaving areas that are important to the patient's functioning intact.

Zac had the procedure in April 2008. After the monitoring phase the team met with Zac and his parents and explained what they'd found. "There were a lot of different spots that were giving him problems, but they were mostly in this one general area," says Rich. "They gave us all the options and told us all the things that could go wrong — that he could lose a lot of function in his right arm if we tried to take too much. But they thought they could get most of what they wanted. They left it up to us to decide how much we wanted to try to take out."

Although the thought of surgery was scary, Zac was ready. "I actually wanted them to take out more than they did because I was so sick of having these seizures — they were a really big part of my time that got wasted," he says. "And I already knew the surgeon, Dr. Gupta, and he explained to me everything he was going to do."

While in the operating room for the second stage of surgery, the team can double-check again which areas to remove and which to leave in. "With the mapping we found the area that was controlling Zac's hand and sensation to his hand," explains Sullivan. "Once his brain was exposed we could stimulate that area of the brain and see if those electrical impulses were transmitted down to his hand."

About a month after the surgery, Zac had a seizure. Sullivan had told the family that it would be a miracle if the surgery alone was so successful that Zac wouldn't need to take any medication, so they weren't taken by surprise. Zac began taking medication again and a year later, he hasn't had a second seizure.

Zac, his family and his doctors are happy with the results. Sullivan says that in a case like Zac's, where the team knew they wouldn't be able to remove all of the area responsible for the seizures, the chances of being completely seizure-free are at best 50-50. In cases where surgeons can remove the entire area, the chances are around 60 to 70 percent. "Although it's very helpful, it's by no means 100 percent," says Sullivan.

Still, the surgery can be a valuable option when, as with Zac, medications don't work. If a second medication fails, it's unlikely that the child will respond to any of the epilepsy medications. "Many of these kids are put on five, six or seven different medications over the years," says Sullivan. "We think they should at least be referred [to a pediatric epilepsy specialist] if they don't respond to a second medication."

Zac is now back at school, practicing for his driver's license test, playing on the school golf team and hanging out with friends. The only lasting effect of his surgery is mild weakness in his right arm. Asked if it was hard to get used to not having seizures, he politely hesitates for a moment before answering — nope. "They were there, now they're gone, and I'm glad," he says. "I'm moving on."

Sierra Tzoore is a freelance writer in San Francisco.

February 2010

Related Information

UCSF Clinics & Centers

Pediatric Brain Center

Pediatric Epilepsy Center of Excellence
1825 Fourth St., Fifth Floor
San Francisco, CA 94158
Phone: (415) 353-2437
Fax: (415) 353-2400

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