July 14, 1999 BALTIMORE (AP) - A Nebraska teen-ager plagued by seizures from a deadly neurological condition had surgeons remove half of her brain to stem the spread of the rare disease and relieve her agony.
"I've lived all my life with seizures," Amber Ramirez said before Tuesday's nine-hour operation. "I'm tired of having to put up with it."
The left side of Amber's brain — the side that controls speech and fine motor movements — was removed at Johns Hopkins Medical Center. A hospital spokeswoman said the operation went "as expected."
Her condition was not immediately released. The surgery may leave 15-year-old Amber without the ability to speak, but she didn't want to put up with the constant seizures, a symptom of Rasmussen's disease, any longer.
Without the surgery, the Lincoln, Nebraska, girl faced the possibility of mental retardation, paralysis and even death as the disease gradually attacked her brain.
"Rasmussen's syndrome eats away at one side of the brain like a PAC Man," said Dr. John Freeman, director of the pediatric epilepsy program at Johns Hopkins in Baltimore.
Amber and her mother, Sheri Ramirez, knew that the girl was considered old for the procedure. But Dr. Benjamin Carson, her surgeon, said he was confident the procedure will work, though she will need years of rehabilitation.
"She's a bit older than most patients who had a hemispherectomy but she's certainly not the oldest patient we've operated on," he said.
Amber's disease began with a limp in 1993, when she was 9. She couldn't remember getting hurt, but her right foot ached. She was in a wheelchair two months later.
Then the seizures began, one each hour, pulling on her right leg and arm until she wanted to scream from the pain.
She was eventually diagnosed with Rasmussen's syndrome, which affects about 1,000 people worldwide. Medication and surgery to remove diseased snippets of brain tissue slowed the disease but could not stop it.
Amber's doctors say the remaining portion of her brain will try to compensate for the tissue removed.
"After a hemispherectomy, the other side of the brain picks up a lot of function," Freeman said. "Intelligence and memory remain, but the patient will walk with a limp and will not be able to use their opposite hand."
Ms. Ramirez said she and her daughter understand that the rehabilitation will be long and difficult.
"We thought a lot about the future when making our decision. We thought about Amber maybe being able to leave home and being independent," Ms. Ramirez said. "Amber wanted to get rid of her seizures, to not have to have somebody walk two steps behind her all the time."
Copyright 1999 The Associated Press. All rights reserved.