Doctors who operated on Chiari Rivera say there's an 80 percent chance her seizures will stop.
By LISA GREENE
Published May 8, 2004
[Times photos: Cherie Diez]
Chiari Rivera and her daughter, Kaylee, 4, sort through the girl's hair clips at home Thursday after Kaylee put a few in her mom's hair. The next day, Chiari Rivera underwent brain surgery at Bayfront Medical Center to remove the part of her brain where epileptic seizures start.
Dr. Erasmo Passaro points to Rivera's hippocampus on her brain scan during the surgery.
Dr. Fernando L. Vale, a Tampa neurosurgeon, looks through the microscope into Chiari Rivera's brain Friday as he removes the hippocampus during surgery at Bayfront Medical Center. Assisting are surgical technologists Diane Meares, left, and Regina Everling.
ST. PETERSBURG - Mike Rivera's face lit up as he walked in the door Thursday and greeted his wife, Chiari, with a kiss.
His smile didn't betray the worry he always feels when he leaves her alone - a worry he hoped would end forever in one more day.
One more day, and Chiari Rivera's doctors would try to stop the epileptic seizures that have left her body bruised and her memory tattered.
One more day, and she might look forward to being able to drive. She would be a giant step closer to performing life's simplest chores - cooking dinner, bathing her youngest child, even showering - without someone home to safeguard her.
But to get past that day, Friday, Rivera would have to undergo surgery to take away a piece of her brain.
* * *
As scary as the surgery sounds, epilepsy doctors say it should be performed far more often.
"This is arguably the most underutilized accepted treatment practice in all of medicine," said Dr. Jerome Engel Jr., neurology and neurobiology professor at UCLA's David Geffen School of Medicine.
Between 100,000 and 200,000 U.S. epilepsy patients with uncontrolled seizures are candidates for the surgery, Engel said. But only 2,000 to 3,000 are performed each year.
"People think of it as a last-resort procedure," said Rivera's doctor, Erasmo Passaro, director of the comprehensive epilepsy program at Bayfront Medical Center. "And it's not."
The surgery has risks. In Rivera's case, the surgery has about a 1 percent chance of stroke. The operation takes the surgeon near a key artery in the brain, and he must avoid disturbing it.
But such risks are smaller than those of uncontrolled seizures, Passaro said. That carries a higher risk of sudden unexplained death, depression and suicide and injuries during seizures.
A few weeks ago, Rivera bit her tongue until it bled. Her hair once caught fire when she had a seizure while cooking. Her husband often has caught her just before she hit furniture or the floor.
"I've always been there for her," said Mike Rivera, 44 and a bus driver for the Pinellas Suncoast Transit Authority. "She's never gotten hurt, not if I could help it."
Still, Chiari Rivera, 32, finds the missing pieces of memory intensely frustrating. Even not being able to find her nail polish tells her what she has lost.
"Sometimes, I just sit down and cry," she said.
Rivera was the sixth patient to have epilepsy surgery at Bayfront, one of five Florida hospitals designated as comprehensive epilepsy centers. Fifteen years ago, Passaro said, Rivera could have had surgery at only a few hospitals in the nation.
But today, she is a textbook case.
Bayfront is one of 19 U.S. hospitals taking part in a National Institutes of Health trial studying whether such patients should have surgery sooner. (Rivera is not a part of the trial.)
Epilepsy patients often don't have surgery until several years, even decades, after diagnosis, said Engel, who is principal investigator of the NIH trial.
"By that time, people are so disabled by having recurrent seizures . . . they aren't able to acquire the vocational skills, the interpersonal skills . . . to live a normal life," he said. "That's a tragedy."
* * *
By Friday morning, Rivera was covered in sterile blue sheets, only a few inches of her head exposed. Neurosurgeon Fernando L. Vale cut through her skull, just in front of her ear, and began probing deeper, heading toward the trouble spots.
The key to the surgery was to first pinpoint the spot where Rivera's seizures start. Bayfront has special equipment, a high-resolution MRI, to map the brain. Passaro brought the MRI images into the operating room and spread them out on a light box: See how it's smaller on this side, right here? See the bright spot, which means scarring, right there?
As part of the testing, Rivera stayed in the hospital for a week with electrodes monitoring her brain impulses and a video camera recording seizures.
All the tests showed the electricity that disrupts Rivera's brain begins deep in her right temporal lobe. To stop it, Vale planned to take out the offending pieces, the amygdala and the hippocampus, deep in her brain.
He moved steadily deeper in Rivera's temporal lobe, using tools and a slender tube to suction away blood. The suction ran with a constant swoosh, as if Rivera was undergoing nothing more serious than having her teeth cleaned.
"That's the hippocampus right there," Vale announced. "We're in the depths of the brain."
A little more work, and Vale positioned an oversized microscope above the opening in Rivera's skull, then stopped to let Passaro see the hippocampus, glistening white and gracefully curved.
Only its texture, tougher than normal brain tissue, betrayed the damage. Because of the scarring, Passaro said, it wasn't helping Rivera's visual memory, as it should. The other side of Rivera's brain should take over the work of the missing piece.
A few more snips, and it rested on a surgical table, a macaroni-sized fragment that looked too tiny to wreak such havoc.
* * *
Rivera remembers a day when she was 6, when she saw sunlight shining in her bedroom window, and then suddenly it was dark.
There were other gaps as she grew up. A day in high school, American lit class. One minute, she was surrounded by students. The next, the students were gone and the teacher was shaking her.
Back then, her seizures were quiet. Not the convulsive, "grand mal" seizures that many people associate with epilepsy, but more subtle. She would stare into the distance. Sometimes, she fainted.
Her mother didn't think she was diseased. She believed it was evil spirits, some kind of possession.
Rivera met her future husband when they lived in the same Rhode Island apartment complex. When Mike Rivera saw her have a seizure, he knew something was wrong.
A doctor told Chiari Rivera it was epilepsy and prescribed drugs. At first, she wouldn't take them.
"I didn't want to admit that I got seizures," she said.
But once she accepted the diagnosis, she learned something else: While drugs stop most patients' seizures, and reduce them for others, they don't help about 20 percent of those with epilepsy. Rivera tried one drug that made her hair fall out in clumps, another that made her drowsy.
Her seizures became more frequent, and worse. She began having grand mal seizures, once a year, then twice, then twice a month. The smaller ones came more often, two or three each week.
The couple taught 11-year-old son Jason to lay his mother on her side, so she wouldn't choke on saliva. They taught 4-year-old Kaylee how to call 911.
Neither child has had to rescue her, but the knowledge was a burden Rivera didn't want on their small shoulders. "I feel like it's hard because it's, "My mommy has a sickness,' " she said.
Chiari Rivera came through the surgery well Friday. The doctors say it has an 80 percent chance of ending her seizures. But it will be a year, maybe two, before the Riveras know.
Until then, they said the day before the operation, they will wait, and they will hope.
And if it doesn't work?
Rivera looked at the floor, then up at her husband.
"Then at least," she said, "we tried."
WHAT IS IT? Epilepsy is a brain disorder that causes seizures. It affects about 2.5-million Americans.
WHAT HAPPENS? Seizures are triggered by a sudden change in the electric signals that brain cells send to each other. Seizures can cause convulsions, trance-like staring spells, fainting or other involuntary movements.
HOW IS IT TREATED? Medication can prevent or reduce seizures for most people. Other treatments include surgery, diet and stimulation of a nerve that leads into the brain.
MORE INFORMATION: Bayfront Medical Center is participating in the Early Randomized Surgical Epilepsy Trial. For information, go to www.erset.org or call 727 824-7132.
Source: The Epilepsy Foundation, the National Institutes of Health