Surviving rare, COVID-related stroke leaves UB medical student with powerful lessons

Editor’s note: This is the first part of a two-part story about Sydney Johnson, a medical student in the Jacobs School of Medicine and Biomedical Sciences who suffered a rare, COVID-related stroke last summer. Part 2 will be published on Feb. 6.

When she talks about why she wants to be a doctor, Sydney Johnson tells the story of how she and her twin sister came into this world. Sydney was supposed to be delivered by C-section, since she was in a breech position, but somehow, regrettably, that didn’t happen. The physician decided to deliver both babies naturally. It was a decision that Sydney and her mother nearly paid for with their lives.

Amazingly, they both fully recovered. But that dramatic story instilled in Johnson from an early age a healthy respect for the fact that literally nothing about health care is routine.

More than two decades later, after graduating from Dartmouth College and heading into her second year as a UB medical student, she would again come perilously close to another life-or-death situation.

It was early last August and students in the Jacobs School of Medicine and Biomedical Sciences at UB were back in class full time. As vice president of the Buffalo chapter of the Student National Medical Association — the nation’s oldest and largest organization serving the needs of medical students of color — Johnson wasn’t just studying intensely. She was busy with club activities and the school’s white coat ceremony.

Before long, she had developed a cough and a sore throat, her back ached and she was tired. When she tested positive for COVID-19, she wasn’t surprised. “I wasn’t that concerned,” she recalled. “Two days later, I was studying again, doing problem sets.”

Then she developed a migraine, which she hadn’t had in years. Typically, she would take an Excedrin and it would go away, but this time she couldn’t keep anything down. “The headache just never went away and I kept throwing up,” she said.

Within a few days, she gave up on studying. She tried to read emails but couldn’t manage to look at the screen. She noticed her fingers were tingling a little, and she thought maybe she had slept on her hand. She contacted the Jacobs School and told them she would have to postpone an upcoming exam; she was too sick to study.

Johnson’s mother, Nahkema Clay, was growing ever more concerned. “Being a nurse, I was making mental notes,” she said. “I was thinking, why is she not getting better?”

She tried to get her daughter to eat and drink. She encouraged her to sit on the porch, to get some fresh air. Clay remembered saying: “‘Tie your robe. Why are you holding your arm like that?’” When Johnson tried to grab her sash to tie it, she couldn’t.

“I said, ‘This is not normal. We’re going to the hospital,’” her mother recalled. “I called my boss and said, ‘I think my daughter just had a stroke.’”

Johnson realized that she was having all the symptoms the stroke commercials warn about: Her facial muscles weren’t working, her speech was slow and her balance was compromised.

In less than an hour, staff at Erie County Medical Center got Johnson into an ambulance and sent her to Gates Vascular Institute, a Kaleida Health facility and a major teaching affiliate of the Jacobs School. At GVI, UB neurosurgeons have been pioneering innovative approaches to treating strokes for decades.

On the way, Johnson began receiving the blood thinner heparin. When she arrived, she was taken to the Intensive Care Unit.

By the next morning, she was declining rapidly. She was diagnosed with cerebral venous sinus thrombosis (CVST), a rare condition in which a blood clot forms in the brain’s venous sinuses, preventing blood from draining out of the brain.

Elad I. Levy, SUNY Distinguished Professor, L. Nelson Hopkins Chair of Neurological Surgery, and chair of the Department of Neurosurgery in the Jacobs School, was leading the care team. That turned out to be fortuitous: Levy, an international expert in neurovascular disease, had already diagnosed and successfully treated a number of CVST cases, often in otherwise young, healthy individuals. Some of them, like Johnson, had been infected with COVID-19.

“She was in acute crisis,” said Levy, co-director of the Gates Stroke Center and president of UBNS, the neurosurgery practice plan of UBMD Physicians’ Group. “She had already had a bleed into the brain. CVST has a death rate of about 5%. Most people can survive, but when the condition is so robust, as it was with Sydney with every vein occluded, that’s a much higher fatality rate.”

What was the cause? Johnson was experiencing a number of risk factors simultaneously: She was infected with COVID-19, she was dehydrated, she was taking hormonal contraception and she’s a carrier for sickle cell trait, meaning she doesn’t have the disease but carries one gene for it. 

“It was a perfect storm for her,” Levy said. “In these very rare cases when multiple veins are involved, the blood coming into the brain can’t drain out. This causes the brain to swell in the skull, which can lead to hemorrhage.”

“I saw her in the ICU before the procedure,” said Rosalind Lai, a UB neurosurgery fellow who assisted Levy in the operation. Lai had just begun her fellowship in the Department of Neurosurgery after completing her residency at Harvard.

“Sydney was rapidly declining, very sleepy, weak on one side and not doing well,” she said. She noted that seeing such a young, healthy person, particularly someone training to be a physician, so compromised made a definite impression on her. “Especially because she is a medical student and such a high-functioning individual, it hit closer to home.”

When a single clot in the brain is involved, the standard of care is to treat the patient with blood thinners. But, Levy said, multiple clots in the veins of the brain, which is what Johnson had developed, require a more aggressive approach. “You need to act fast and mechanically pull those clots out of the brain veins,” he said. “The faster you get in there to open up the vessels, the better the patient will do.”

The decision was made to do just that, a procedure called a mechanical venous thrombectomy, where the neurosurgeons literally suck the clots out of the veins.

The procedure is more complicated and riskier than with a classic arterial stroke.

“The veins have thinner walls than arteries,” Lai explained. “So we have to be very careful and skillful to do the procedure without causing damage to the walls of the veins.”

“It was scary,” said Clay. “I signed the health care proxy right there.”

The next time the family saw Levy, he brought them the news they had been so anxious to hear: The procedure was a success.

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