What I think is interesting about this story is how much control of her health care the patient took.
The woman has a stroke and is diagnosed with moyamoya (the Japanese word for "puff of smoke"), a rare disorder where blood vessels in the brain become blocked.
She found one bit of encouragement: a Web site, www.moyamoya.com, created by a patient, described an operation for the disease, a type of bypass in the skull that could improve circulation to the brain and prevent further strokes. The site included a link to Dr. Gary Steinberg, the head of neurosurgery at Stanford University Medical Center. Dr. Steinberg, who has operated on more than 130 people with the disease, is one of the few surgeons in the United States who have treated more than a handful of patients with moyamoya.
Mrs. Young e-mailed him. After studying her records and ordering more tests to map the blood vessels in her head, he recommended two operations, one on each side of her skull, a week apart. Her health insurer balked at first, insisting that she be treated in Missouri, but ultimately agreed that no brain surgeon there had Dr. Steinberg's expertise in moyamoya. By late February, Mrs. Young was on her way to Stanford.
This kind of thing, emailing the expert in your disease is going to become increasingly common. Some of it will be doctors e-mailing other doctors, but if we drop the ball patients will do it themselves.