A Race Against Time
Surviving Stroke at Age 19
Pamela Hsieh has an energetic, buoyant personality. A dancer and drama club member in high school, she sweeps her arms in broad, animated gestures as she talks. She blurts out piercing sound effects or hops out of her seat to demonstrate her point. But Hsieh, 26, mostly uses her right arm to make those broad gestures. When she gets up to walk, her right leg takes the step while her left leg swings in a slight limp. And, though she laughs at just about anything, the smile that is constantly spread across her face is a little asymmetrical.
That she can move her left side at all is a drastic improvement from her condition seven years ago. Hsieh clearly remembers the day in July 2003, just after her freshman year of college, when a stroke partially paralyzed her: Then 19 years old, Hsieh had just been recognized for high performance at her summer sales job when the pain hit her. It was as if someone were kneading her brain like dough, throbbing harder by the second. She slumped over in a dizzy spell, almost knocking her head against the chair in front of her. Her colleague could barely understand her slurred warning: "My head really hurts."
Every muscle function on Hsieh’s left side started to disappear, from her eyebrows to her toes. Her colleagues abruptly stopped the conference to take her outside, but she couldn’t walk, her eyes rolling to the back of her head. The ambulance technician asked her to move her fingers, but they fell limp,
The ambulance rushed her to a nearby hospital, where a CT scan showed a possible aneurysm. She needed a neurosurgeon who could handle rare pediatric brain hemorrhages…immediately. When Hsieh arrived at the University of Chicago Medical Center by helicopter, Bakhtiar Yamini, MD, was waiting for her.
"She came in basically in a coma," Yamini recalled, "with a hemorrhage big enough that we thought she was going to die."
Young, Active…and Disabled
Hsieh is one of about 300,000 Americans born with an arteriovenous malformation (AVM), a defect in which the brain’s arteries and veins are tangled in a knot. Hsieh’s AVM was on the right side of her frontal lobe, which controls movement of the left side’s arm, leg and facial muscles. As blood continues to pump through these entangled vessels, the possibility of a rupture is like a hemorrhagic stroke waiting to happen.
Yamini, associate professor of pediatric neurosurgery, immediately performed the first of two craniotomies to relieve the pressure and swelling on Hsieh’s brain because of the hemorrhage. He spent four hours removing a palm-sized portion of Hsieh’s skull bone from the right frontal lobe, allowing the brain room to expand. The piece of bone was placed in a freezer to be attached in a later surgery. He then removed as much of the coagulated blood as he could without causing more bleeding and secured the area with sutures.
Ten days later, Hsieh started to wake up.
She could only see blurry, moving images as she drifted in and out of consciousness. She couldn’t talk or move her left side, so the nurse asked her to introduce herself on pen and pad to the tall, blurry image approaching her. Hsieh scribbled, "You look like Steve Martin." Joel Schwab, MD, associate professor of pediatrics, could only look at the paper and laugh.
"Here was this cute, active young lady, a good student, now left with a significant disability," recalled Schwab, who took over Hsieh’s care between surgeries and has been a pediatrician for more than 35 years. "Many of my residents were not much older than her, so this really hit us close to home."
Physical therapy while waiting for her second craniotomy helped her sit up and stand. She eventually began to speak again, but only in Mandarin, her first language.
"I was like a baby in a young adult’s body," Hsieh recalled. "My brain had regressed back to infancy. I was wearing diapers; I couldn’t move on one side and when I didn’t like something, I would throw it across the room like a child." A few weeks later, Hsieh began to speak in English again, and she credits Schwab for making the initial recovery period just as productive as it was fun. "He made humor a part of recovery," Hsieh said. "He’s so old, despite his age."
Three months later in September 2003, Yamini performed a second craniotomy to remove the AVM. After an angiogram showed the location of the malformation, Yamini coagulated the blood vessels leading into the tangled knot and pulled the knot out of Hsieh’s brain. In the final step of the seven-hour procedure, Yamini reattached the portion of her skull that had been stored in a freezer.
The Rehab Revolution
With the AVM no longer a threat and her movement partially restored, Hsieh began to focus on overcoming the weakness on her left side, along with other aftershocks. In Spring 2004, Hsieh went back to college as a sophomore at the University of Illinois in Champaign but seizure-like symptoms appeared for up to an hour at a time. The anti-seizure medications she was prescribed at another hospital made her easily fatigued, compromising her performance in school.
She came back to the Medical Center where neurologist James Tao, MD, PhD, took over treatment for the seizures with the goal of helping her to regain her stamina and eventually weaning her off the anti-seizure medication.
During Hsieh’s recent visit, Tao told her the anti-seizure medication was no longer necessary. "She’s really a remarkable lady, and she never gave up," Tao said. "She always pushed herself to the limit."
Hsieh estimates that now, at age 26, seven years after the stroke, she has regained about 75 percent of the movement she lost on her left side, thanks to physical therapy and frequent workouts, often with a personal trainer. Her right side has been working so hard to compensate that the size difference between her right and left calf makes them look like they belong to two different people. On a scale of zero to 10, the sensation in her left hand is about a one. This leads to "a lot of dropping things" and incidents like looking for her keys only to find them grasped in her left hand.
Hsieh has had to tackle spiritual and emotional challenges as well. "I’ve struggled with self-image because of the asymmetry in my face and body, and there’s an insecurity involved as well when you start to feel inconvenient to the people you care about." she said. She’s had to distance herself from some friends who don’t have the patience to walk a little slower at Hsieh’s pace. The discrimination and insensitivity from strangers has led to conflicts with people who don’t understand why she’s parking in the handicap spot.
"It’s not as obvious that I need help because I’ve weaned myself off of equipment that advertises my condition, like braces, a cane or a wheelchair," Hsieh said. "I have to keep an inner circle of people with compassion. I don’t have time for people who are insensitive."
Every reminder of her disability has come with bright signs of progress. Just one semester after returning to college, she spent a year studying abroad in Italy. In May 2009, she graduated with degrees in Italian and creative writing. And in April 2010, she launched a blog, called "Rehab Revolution," to inspire others who are overcoming a disability.
She also keeps in touch with Schwab and Yamini via e-mail. "I just got back from a seven-day tour of the West, including Yellowstone and Arches National Parks," Hsieh wrote in a recent e-mail. On the trip, she successfully hiked two mountains. "It was really tough — tons of rocks, uneven ground, slopes and it was about 1.5 miles each way. I even got a round of applause when I returned to the bus after that one...Just thought you might want to see how I'm doing lately."
Her sign-off: Life begins with the mind.