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.
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
"It's so wonderful for patients to see
her," said her mother. "She's a real
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
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
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."