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Stanford patient recounts journey back from massive brain bleed

Ten years after a Stanford patient suffered a massive stroke and underwent two brain surgeries, she's publishing a book of poems.

When Orlena Fong Shek talks about her medical journey, she turns to numbers: 14 ambulance rides in five months, six weeks in Stanford's hospital, more than three weeks in a medically induced coma, and two brain surgeries.

This and years of arduous recovery were the aftermath of a stroke caused by a rare blood vessel disease, called moyamoya, that blocks blood flow to the brain.

Fong Shek had been plagued by symptoms of moyamoya -- without knowing she had it -- her whole life. But she was diagnosed only after her condition culminated in a car accident in late 2011.

Now, Fong Shek, who frequently talks publicly about her story and surviving a stroke, is marking the 10th anniversary of her diagnosis and subsequent recovery by publishing a collection of poems written by moyamoya survivors.

At the time of her accident, Fong Shek was driving on the freeway with her toddler daughter and began to swerve. "It felt like I was losing control of the car," she said. She tried to drive to the shoulder of the highway, but lost control and crashed into the center divider.

She and her daughter survived the accident, though Fong Shek felt dizzy and had a headache. A Good Samaritan called Fong Shek's siblings, who drove them to safety, but Fong Shek's symptoms worsened after she was home.

"My head was killing me, and I decided I needed to call an ambulance to take me to a hospital," she said. She collapsed after dialing 911. Doctors in the ER determined that Fong Shek had suffered a massive hemorrhagic stroke, a brain bleed so dangerous that only 26% of people survive.

Rather fortuitously, the doctor on call had formerly worked with Gary Steinberg, MD, a world-renowned moyamoya specialist and neurosurgeon at Stanford Medicine, and was able to diagnose the disease.

A long road to recovery

Fong Shek was transferred to Stanford Hospital to begin moyamoya-specific care, but she was in rough shape, said Steinberg.

Orlena Fong Shek, moyamoya survivor. Credit: Kevin Kitsuda Photography

"We weren't even sure she was going to survive," he recalled.

In patients with moyamoya, arteries at the base of the brain that deliver blood gradually become narrower, blocking the blood flow. Smaller vessels in the brain try to compensate but aren't equipped to handle large blood volumes, so they can burst. (On a brain scan these fragile vessels look like a puff of smoke, which in Japanese is "moyamoya.")

This is what happened to Fong Shek, who was hospitalized at Stanford for about a month, when she spent some time in an induced coma to help her brain heal. Her recovery continued for several months in various hospitals so she could regain her strength. By May 2012 she was ready for brain surgery that would effectively end her issues with moyamoya.

The human scalp is so well connected when it comes to blood circulation, that it's possible to reroute an artery (which carries blood from the heart to other organs) from the scalp to the brain. That's the basic premise behind the two moyamoya surgeries Steinberg performed, a week apart.

The surgeries were successful, but Fong Shek knew that the difficult part was hardly over. Her initial stroke had weakened the left side of her body and affected her speech, so she needed intensive speech, occupational and physical therapy.

"Orlena's recovery was remarkable," said Steinberg, who has performed nearly 2,000 moyamoya surgeries in his 30 years treating the disease. "For a long time, she was compromised, both cognitively and physically. But she was a very determined young woman, with fortitude, perseverance, and a wonderful positive attitude, which I know contributed to the success of her recovery."

Sharing a story of support and healing

When talking to Fong Shek, who was an in-house attorney for a software company at the time of her stroke, one would never suspect that she has suffered brain trauma. She's eloquent and speedy when she speaks, her enthusiasm to share her story apparent. But this wasn't always the case.

She said that 10 years of rehabilitation and the help of her family have helped her regain verbal and physical capabilities in a way that, after her first stroke, seemed unfathomable. Her family even grew by one when her son was born in 2017.

A portion of the book's proceeds will go to local stroke organizations.

During her recovery, she also found support from other moyamoya survivors, who call themselves warriors. She got the idea of publishing a book when she noticed stroke survivors, including moyamoya patients, on an online social media platform sharing poetry they had written about their experiences with stroke and recovery. Their collective efforts resulted in the book "Emerging from the Smoke: A Collection of Warrior Voices," which is expected to be published by Archway Publishing from Simon and Schuster, later this spring.

Steinberg wrote the forward of the book. "As a doctor I focus on the technical aspects of healing and restoring blood flow to the brain," said Steinberg. "But there's a humanistic side to healing, too, and that's hugely important to the patient recovery process. I see that captured in this book."

Navigating the past decade has had its challenges, but Fong Shek said what really got her through was a "mind over matter" strategy. "The potential of the mind is infinite," she said. "And you can use it to rise above physical barriers you might have."

Fong Shek, who is Chinese American, turns 44 this year, and in Chinese culture, the number four is bad luck. But the luckiest number in Chinese culture is eight, she said. "My whole philosophy is to take the bad and turn it into something amazing and remarkable. And four plus four is eight."

Photo by Alina Grubnyak

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