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 P.G. Vining, the study's lead author and a Hopkins neurology and pediatrics professor. "The data prove their courageous decision was correct."
The operation itself it not new; it has been performed for at least three decades. The study, though, offers a look at its long-term effectiveness and the quality of life for those who have undergone this extreme operation.
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 in the brain 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 up to 12 hours, surgeons remove the entire cortex, the so-called gray matter, on one side of the brain, along with some of the white connective tissue. They leave intact the deep structures, including the thalamus, brain stem and basal ganglia. The empty space eventually fills with fluid.
Patients have some paralysis on the side of the body opposite 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.