Neurosurgeon's expertise lets patient plunge back into life

Norbert von der Groeben

Tara MacInnes swam the length of the Golden Gate Bridge five years after surgery.

When 21-year-old Tara MacInnes recently swam the length of the Golden Gate Bridge, it was not a mere indulgence of youthful daring. It was an affirmation of her triumph five years ago over a serious case of Moyamoya, a potentially lethal brain disease so rare that few doctors knew of it and fewer still could perform the life-saving surgery.

MacInnes, who lives with her parents in San Jose, did not have to travel far to find an experienced surgeon: since 1991 Gary Steinberg, MD, PhD, chief of neurosurgery at Stanford Hospital & Clinics, has performed almost 600 Moyamoya procedures, where sutures are finer than a hair and needles no larger than an eyelash. His expertise draws patients from around the world, making Stanford's Moyamoya Clinic the largest for adults worldwide. The clinic has growns from Steinberg's seeing a couple dozen patients in its first year to his performing 122 revascularization surgeries on Moyamoya patients last year.

Tara MacInnes began to have migraines at age 6, and then, at 16, she found out that she had had multiple strokes early in her life. She arrived at Stanford and was dismayed upon learning about her condition. "Just knowing my head was going to be cut open was enough for me," she said. But as Steinberg explained how he would help her, some of her fear slipped away. "He was very calm," she said.

Moyamoya, which means puff of smoke in Japanese, was first identified in Japan about 50 years ago and was named by its researchers to describe the appearance of the tangle of arteries in the brain that characterize the disease. That tangle blocks blood flow in the brain with devastating effects: strokes, progressive cognitive decline and seizures. Its cause is unknown, though some genetic link is likely. Untreated, it can be fatal. It affects just one in 1 million Americans, most often appearing in children under 10 and adults in their forties.

Steinberg did for MacInnes what has become a procedure he favors. He bypasses the Moyamoya blockages by connecting a scalp artery to a brain artery to restore blood flow.

While MacInnes' operation was a success, adjusting to life afterward was not easy, MacInnes said. Today she offers support to others who face the same problems: She serves as a volunteer counselor for patients and their families two days a week at the clinic. "It was terrible not having met anyone who had been through it," she remarked.

Her mother, Jill MacInnes, also works at the clinic. "We realized how frightened we had been and didn't get to hook up with anyone who'd been through it," Jill MacInnes said. "I was determined that nobody coming here from outside the Bay Area was going to go through it alone."

Since Tara's operation, her parents have marveled at how she has embraced life. She's taken up salt water and freshwater fishing. And she got back in the water. From age 9 to 14, Tara did synchronized swimming, and, in high school, she switched to water polo. A few years after the operation, she was looking for a way to test her limits and to raise awareness about about Moyamoya, and she decided to try open-water swimming.

The Oct. 26 Golden Gate Bridge event was MacInnes' fourth open-water swim. Earlier this summer she swam from Alcatraz to San Francisco and also did open-water swims at Lake Tahoe and La Jolla.

"I don't really worry about Moyamoya now," MacInnes said. "I don't have any symptoms. I totally plan to live as long as anyone."

Sara Wykes is a writer in Stanford Hospital's communications office.