Determined survivor not beaten by rare and dangerous brain disease
STANFORD, CA—When 21-year-old Tara MacInnes leaps into the cold water of the San Francisco Bay at 10 a.m. Sunday to swim the length of the Golden Gate Bridge, it will be no mere indulgence of youthful daring. The long, wave-whipped swim will be another affirmation of her survival against a potentially lethal brain disease called Moyamoya, a disease found in just one in one million Americans, so rare that few doctors know of it and fewer still can do the delicate surgery that offers hope for a healthy future.
MacInnes, who lives with her parents in San Jose, did not have to travel as far as others do to find one of the world's most experienced Moyamoya surgeons, Dr. Gary Steinberg, chief of neurosurgery at Stanford Hospital & Clinics. Since 1991, he has performed almost 600 life-saving procedures on more than 350 patients. With this kind of brain surgery – where sutures are finer than a hair and needles no larger than an eyelash, experience matters.
Steinberg's preeminence as a Moyamoya surgeon draws patients from around the world and in numbers that make Stanford's Moyamoya Clinic the largest for adults worldwide. In the clinic’s first year, a couple dozen patients arrived. "There were so many patients coming to us and we were hearing stories that nobody wanted to treat them," said the Clinic's nurse coordinator Teresa Bell-Stephens. Last year, Steinberg performed 122 revascularization surgeries on Moyamoya patients.
Moyamoya was first identified in Japan about 50 years ago and was named by its researchers to describe its appearance in the brain – a tangle of arteries that look like a puff of smoke. The tangled arteries block blood flow in the brain and those blockages have devastating effects: Strokes, progressive cognitive decline and seizures. Its cause is still unknown, although some genetic link is likely. Untreated, it can be fatal. It most often appears in children under 10 and adults in their forties. Tara MacInnes began to have migraines at age 6, what was likely the first sign of Moyamoya's impact. Then, at 16, she learned she had had multiple strokes early in her life. Ultimately she arrived at Stanford to see Steinberg.
She was a typical teenager then. "Just knowing my head was going to be cut open was enough for me," she recalls. "Pretty much as soon as my parents told me I needed brain surgery, that's all I needed to know."
When she met Steinberg and they talked, some of her fear slipped away. "I knew I was in the best hands possible," she said, "and he was very calm about the way he described things."
Steinberg would do what has become a procedure he favors – bypassing the Moyamoya blockages by connecting a scalp artery to a brain artery to restore blood flow. He has done the operation for almost 20 years. Tara's parents, of course, would be happier if there were an even longer track record of Moyamoya survivors, but Tara has a slightly different way of thinking. "I don't really worry about it now. I don't have any symptoms. I totally plan to live as long as anyone," she said. "I don't intend on Moyamoya being what shortens my life."
But she is still very involved with it – as a volunteer counselor for patients and their families at the clinic. She's taking classes at DeAnza Community College, but she spends two days a week at the clinic to help new patients, to share her experiences, to be an example of what's at the other side of surgery. Before she had her surgery, it was terrible not having met anyone who had been through it," she said.
What her parents noticed after her surgery was that she wasn't really talking much about it and didn't really remember much about it, or so they thought. "Then we visited another patient and she started talking about things we'd never heard her talk about," said her father, Campbell. "There was an outpouring of her spirit and we realized it was good for us to talk about it, too. It turned into a 'pay it forward' kind of thing."
Tara and her mother started helping at the clinic. Jill MacInnes now works there full time. "We realized how frightened we had been and didn't get to hook up with anyone who'd been through it," she said. "I was determined that nobody coming here from outside the Bay Area was going to go through it alone." She has also watched the change that happens as her daughter sits with patients before surgery, with their families during surgery and with them all in the recovery area. "If I could, I'd be there all day every day," Tara said.
"It's so wonderful for patients to see her," said her mother. "She's a real inspiration."
Jill and Campbell MacInnes have also watched Tara embrace life, "trying to reach out and do things," said her father, perhaps driven by "the realization that she's stared death in the face." She's taken up salt water and freshwater fishing. She also got back in the water. Her mother was a member and later coach of the Santa Clara Aquamaids, a team which has won dozens of national titles and a handful of Olympic medals for synchronized swimming. From age 9 to 14, Tara learned and practiced that sport and, later, when she wanted to focus more on school, she joined her high school water polo team. Her mother shudders at the thought of all the shots to the head her daughter took then as team goalie, a position she was selected for because she was so good at popping high out of the water, a synchronized swimming move.
But she'd never done open water and, her mother thinks, "was looking for something to satisfy some of that dare we have when we're young."
Along the way, Tara said, she'd like to educate the general public about Moyamoya and available treatments.
She had wanted to try skydiving, too, but that was just a bit too much for her doctor. "I'm opposed to skydiving as a sport in all my patients," said Steinberg, "regardless of whether they have Moyamoya disease." He did ask her to wear a wetsuit – not something so bad when swimming in waters of 50 degrees for hours.
This Sunday will be her fourth open water swim. Earlier this summer she swam from Alcatraz to San Francisco and did open water swims at Lake Tahoe and La Jolla. Her practice has raised her to the 1,500 meters-in-no-more-than-40 minutes speed required for entrants in the Roper Invitational Golden Gate race.
For those who helped her best Moyamoya, her recovery has been sweet. "One of the great things," said Bell-Stephens, "is seeing our children grow up and our young adults grow up to have productive lives, children, careers – and be stroke-free."