Study: Partial Brain Removal Aids Children With Bad Seizures
BALTIMORE - Jody Miller was 3 when she began having seizures that made her body jerk for hours, sometimes days. When medication failed, doctors gave her parents a startling option: have half of her brain removed.
Jody had the hemispherectomy and became part of a Johns Hopkins University study that showed the radical surgery can, in many cases, stop or reduce severe seizures in children and enable them to lead close-to-normal lives.
Today, Jody is a healthy second-grader who hasn't had a seizure in four years.
"Parents of these children agonized about whether to allow this radical surgery," said Dr. Eileen Vining, the study's lead author and a Hopkins neurology and pediatrics professor. "The data prove their courageous decision was correct."
The operation itself is not new; it has been around for three decades. The study, though, looks at its long-term effectiveness and the quality of life for the patients.
Fewer than 5,000 people would be eligible for the operation. It is for those who suffer severe brain abnormalities or a condition known as Rasmussen's encephalitis, a viral-like condition that causes progressively severe seizures.
The seizures can be traced to one hemisphere of the brain. The surgeons thus "get rid of where it's coming from," Vining said.
In an operation that can take 12 hours, surgeons remove the entire cortex on one side of the brain. The empty space eventually fills with fluid.
Patients have some paralysis on the side of the body opposite to the removed hemisphere, particularly the hand and arm. Vision in one eye may also be affected. But they can usually walk and run with a slight limp. Some children have gone on to run marathons and take dancing lessons, Vining said.
Doctors said younger children do best with the operation because their brains are more easily able to compensate for the missing half.
Al Miller said his daughter Jody "leads a pretty normal life." The 7-year-old enjoys playing with Barbie dolls, learning to write in cursive and watching movies, he said. She can run, with a limp, and was in an advanced reading class at school.
Miller is thankful for the surgery but said he "fell apart" when doctors suggested it. Then he reconsidered Jody's deteriorating condition and the increasingly heavy medication that was altering her personality.
"At some point in time families realize it's the only option," he said. "It's the only thing that works."
Vining's study tracked 58 people who had hemispherectomies since 1968. Patients range in age from 2 months to 20 years.
Twenty-nine patients, or 54 percent, became seizure-free, like Jody. Thirteen, or 24 percent, had less severe, non-debilitating seizures following the surgery. Twelve children, or 22 percent, continued to have severe seizures, according to the study. Four patients died.