Epilepsy treatment side effect: New insights about the brain

People with epilepsy are contributing in surprising ways to research into the brain. Some patients are donating brain tissue that's removed in the course of surgery allowing scientists to study brain cells while they are still alive.

SEATTLE — Though Genette Hofmann is still using her brain, last month she donated a bit of it — to science.

Hofmann needed the surgery — her Seattle surgeon was looking deep into her brain, where he found the trigger for the epileptic seizures that had disrupted her life for 30 years. But to get there, he teased out a bit of healthy tissue the size of a lima bean and quickly sent it, with her blessing, to some researchers who were eager to study brain cells while they were still alive.

That’s how Hofmann joined a long line of epilepsy patients who’ve helped scientists reveal secrets of the brain — knowledge that could pay off in better ways to measure consciousness in brain-injury patients and new treatments for diseases.

Research volunteers such as Ruth Nall, who made a different kind of contribution in a California hospital room, reading sentences aloud as a network of surgically implanted sensors kept close track of how her brain worked.

Since she was going to have electrodes implanted anyway, she reasoned, why not help out?

Epilepsy disrupts the brain’s electrical activity, producing seizures that involve strange sensations, behaviors, emotions and, sometimes, unconsciousness. Most people with epilepsy can control seizures with medications. But when surgery is necessary, research scientists can ask to piggyback on the procedures for a rare chance to study the brain directly.

For decades, studies of epilepsy patients have revealed secrets of the brain, like how the two halves operate differently. And research with “H.M.,” a now-deceased Connecticut man who’s been called the most famous patient in the history of neuroscience, revealed key insights into how memory works.

The disease has a long history of revealing the importance of the brain to memory, emotion and everything we call the self, says Christof Koch, chief scientist at the Allen Institute in Seattle, where Hofmann’s cells were analyzed. “Seizures have taught us more about brain and the mind, and the relationship between the two, than any other disease,” he said.

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