Even as a small child, Tara MacInnes, now 27, had headaches, bad ones that felt like a vice grip at her temples. "They were excruciatingly painful," she said. By the time she was eight, she could better describe them to her mother—and her other symptoms, too. "I'd feel a tingling sensation, numbness in my hands and face and sometimes my legs," she said, "but my pediatric neurologist wrote those off as being additional migraine symptoms that many migraine sufferers experience." What she came to call episodes continued into her teen years, sometimes lasting minutes and sometimes affecting her speech.
Then came an episode of frightening proportions. She was 16, out to a meal with her parents. "My entire right arm went numb, the fork I was holding fell to the floor, and the numbing sensation traveled all the way down the right side of my body," she said. "I had no sensation of that half of my body, and my speech was entirely gone." This episode lasted longer than most, at least 10 minutes. "I was terrified," she said.
MacInnes was sent for an MRI. The images showed damage from strokes on both sides of her brain—and soon after, she was diagnosed with a rare cerebrovascular disease called Moyamoya disease. The disease takes its name from the Japanese word for puff of smoke. Moyamoya disease blocks arteries near the base of the brain, forcing smaller blood vessels to expand in number as the body attempts to maintain adequate blood flow. The clusters of those smaller blood vessels can look like puffs of smoke. The condition is progressive and there is no cure. Neurosurgeons, however, can do a workaround, using arteries from the scalp to bypass the one blocked by Moyamoya disease. Those bypass arteries restore proper function at what is effectively a "switching station" for blood to move into the entire brain.
The right treatment for Moyamoya disease
It's a surgery that requires the utmost of precision, requiring a needle as tiny as an eyelash and sutures smaller than a human hair. It is not a procedure to be done by a neurosurgeon without much experience. What helped MacInnes' parents accept such a surgery was the information their daughter's neurologist shared. "You're very fortunate," MacInnes' mother Jill remembers him saying. "There are just a couple of experts in the country, and one of them happens to be at Stanford. I've already put in a call to him." Fifteen minutes later, MacInnes' parents' phone rang. It was Gary Steinberg, MD, PhD. "Although we'd been given this very, very scary diagnosis," Jill MacInnes said, "we felt some relief knowing that these people at Stanford knew what they were doing."