Surviving Rare Stroke Leaves Powerful Lessons for Student

By Ellen Goldbaum

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 University at Buffalo 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.

Sydney’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, the Erie County Medical Center got Johnson into an ambulance to send her to the Gates Vascular Institute, a Kaleida Health facility and a major teaching affiliate of the Jacobs School. At the 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 where a blood clot forms in the brain’s venous sinuses, preventing blood from draining out of the brain.

Elad I. Levy, MD, SUNY Distinguished Professor and L. Nelson Hopkins III, MD, 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 is 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, MD, a Jacobs School neuroendovascular 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.

But it was clear that they would need to be very vigilant during the coming hours and days. Those hours and days were among the hardest. “I wanted to know, where was the threshold for being in or out of the woods? Not knowing was just agonizing,” Clay said.

Johnson surprised the team with the speed of her recovery; she was able to squeeze a nurse’s hand soon after the procedure, and it wasn’t long before she was sitting in a chair.

As soon as she could talk, she told her mother that she would definitely be going back to medical school. Her mother wholeheartedly agreed. “If I have to quit my job to care for you, you are going back to school,” she said.

The joy and relief the family experienced was shared by the whole medical team.

News of Johnson’s outcome spread throughout the hospital and the Jacobs School.

“Experiencing a severe stroke is a terrifying ordeal for anyone. But going through such a harrowing event when you are an otherwise young, healthy person is even more traumatic, both for the patient and her family,” said Allison Brashear, MD, MBA, vice president for health sciences and dean of the Jacobs School. “All of us at the Jacobs School are grateful for the life-saving, quick actions of Sydney’s medical team.”

As he prepared her for discharge, Levy pointed out that this positive outcome resulted from the expertise and collaboration among the whole medical team, including neurosurgery fellows and residents, as well as John M. Hourihane, MD, clinical assistant professor of neurology and a neurologist with UBMD Neurology and Kaleida Health.

“Every one of them was critical to achieving Sydney’s exceptional recovery,” said Levy.

“This is a Buffalo native, born and bred here, with an unbelievable future, who could have met what could have been a tragic end,” he said. “But now she will go back to medical school and realize her dream of being a doctor.”

Still, plenty of challenges remained. The fatigue was overwhelming. Johnson had to use a walker at first. Her days were packed with appointments with physical therapy, occupational therapy, neurosurgeons, neurologists, cardiologists and hematologists, so many that her mother had to take time off from her job. Her mother’s assistance was essential; there would have been no way she could have made those arrangements herself. In addition, she couldn’t drive.

It’s a lesson that Johnson says will stay with her.

Given the proverbial firehose of material that medical students are required to digest on a daily basis, Johnson understood that she wouldn’t be able to resume her studies with her classmates -- she had already missed too much. For the current year she is on a leave of absence. In August she will return to school as a member of the Class of 2026. “It’s really frustrating,” she said. “I’m doing so great but I missed the first block of school.”

True to form, Johnson couldn’t just take it easy. “It is not at all surprising how much Sydney continues to accomplish this year,” said David A. Milling, MD, executive director of the Office of Medical Education and senior associate dean of medical education in the Jacobs School. “She has taken this opportunity to intensify her activism and continue her research on issues related to health care disparities within underserved communities.”

Throughout the fall semester, she continued to serve as vice president of the Student National Medical Association, organizing and running many of its activities. She is also working on a project she began last summer as one of three summer research fellows funded by the Department of Surgery. The program is designed to mentor underrepresented students interested in surgery and to give them exposure to the operating room.

In the OR last summer, she worked under Timothy M. Adams, MD, clinical assistant professor of surgery, who recalled that her enthusiasm for surgery even helped rekindle his own interest in some aspects that had become routine.

As part of that program, Johnson is also working with the Office of Medical Curriculum and SNUG (Should Never Use Guns), a community group that works to combat gun violence, to develop a community-focused, trauma elective that will likely be incorporated into the Jacobs School curriculum.

Of course, her main goal this year has been to focus on recovery and regain strength. A few times a week, she participates in a high-intensity, low-impact conditioning routine at a Buffalo gym, to build up her strength, endurance and balance.

She has taken plenty of lessons from her experience, including the importance of focusing on the patient’s family as well as the patient.

“They say this all the time in class,” she said, “that you are not just treating the patient, you are also treating the family. Checking in with the family has a larger impact than it may seem. I have seen already that it can take almost no time to provide a small update that the family has been anxiously waiting to hear. There are many people holding their breath when it comes to a sick loved one. That extra moment of attention given to the family can change their entire experience.”

Her efforts have also not gone unnoticed by her peers and even by her mentors. “It makes me feel good that you have a Sydney who has had plenty of hurdles and she keeps moving, and then you add this additional hurdle and … she keeps moving,” said Adams. “What she doesn’t know is that other people are watching her, taking inspiration from her.”