May 5, 2020
Although they can happen at any age, approximately two-thirds of all strokes occur over the age of 65. So when Amy Seidenfuss had one at just 36 years old, no one was expecting it, least of all Amy.
The customer service professional was working from home in Gloucester, Massachusetts, when her head began to hurt. Because she’s prone to migraines, she didn’t think anything of it—until she finished her shift and stood up to use the bathroom. That’s when it happened.
“I say that I tripped over my computer cable, but my fiancé was there, and he says that I just hit the floor,” recounts Amy, who suddenly found herself on the floor, unable to move. “I couldn’t get up. My fiancé was trying to pull me up, and I just couldn’t manage to get my feet under me the right way to actually stand up.”
While she was lying immobile on the floor, urging him not to, Amy’s fiancé called 911. Although she doesn’t remember much after that, first responders subsequently took her to the nearest hospital, where she received medication to break up the blood clot that had caused her stroke.
When that didn’t work, she was transferred to another hospital to have a thrombectomy, a surgical removal of the blood clot. Three days later, severe swelling in her brain made Amy unresponsive, forcing doctors to perform yet another procedure: a decompressive craniectomy, the surgical removal of a third of her skull to relieve brain swelling.
“I remember waking up, being in a ton of pain and not understanding why,” Amy says. “I was really scared because the last thing I remembered was being on my bedroom floor.”
Amy panicked. Doctors called in her sister to help comfort her and explain what happened: Due to a blockage in her right carotid artery, Amy had suffered what’s known as an ischemic stroke—a stroke that occurs when blood flow to the brain is blocked, usually by a blood clot.
“I couldn’t believe it,” Amy continues. “I said, ‘What do you mean I had a stroke?’”
Those first few days in the hospital were just the first chapter in what has been a long and trying tale of recovery. Thanks to a lucky break—her acceptance into a ground-breaking clinical trial—Amy is more convinced than ever that her stroke story will have a happy ending.
A Lucky Break
Amy’s stroke occurred February 16, 2019. After 10 days in the hospital, she was transferred to an in-patient rehabilitation center, where she spent nearly a month engaged in speech, physical and occupational therapies to help her manage the fallout from her stroke, including new disabilities on the left side of her body.
“My left leg didn’t work, and my left hand and left arm are still not that great,” reports Amy, who eventually regained the ability to walk but still can’t straighten her left arm or use the fingers on her left hand. With no grip on her left side, Amy is forced to live a one-handed life. As a result, she can’t do even simple tasks by herself. She needs help to get dressed, tie her shoes, buckle her seat belt in the car and cut her food at mealtimes.
“It’s extremely frustrating,” says Amy, who upon leaving rehab in March 2019 moved in first with her sister, then with her father and stepmother. “I couldn’t live by myself because somebody had to watch me 24 hours a day. It was really difficult.”
Although she finally gained enough independence to move back home with her fiancé, Amy remained frustrated by the scope and speed of her recovery. She began searching the internet for clinical trials that might allow her to test a new or emerging therapy. That’s how she discovered PISCES III, a clinical research study to determine whether stem cells injected into a damaged brain can improve function in people who have ongoing disability following an ischemic stroke.
“I didn’t know a lot about stem cells, but I remembered reading something about scientists who figured out how to use them to grow new teeth. When I found out this study was attempting to do something similar in the brain, I was pretty excited,” says Amy, who applied to join the study and was accepted as a test subject shortly after.
Stem cells are cellular blank slates—so-called “precursor” cells that can be programmed to become virtually any type of specialized cell, including blood cells, bone cells, heart cells or, in the case of stroke rehabilitation, brain cells. Reproduced in a laboratory, the cells used in PISCES III are the active ingredient in an experimental drug that’s injected into the brains of subjects like Amy, where it’s hoped that they will help repair the damaged tissue that causes stroke-related disabilities. Study participants receive either the drug or a placebo. Because it’s a double-blind study, neither patients nor doctors know who has received which.
While the study eventually will encompass 30 sites across the country, there currently are just 20—only 11 of which offer both surgery and pre- and post-surgical assessment. The site nearest Amy is JFK Neuroscience Institute at JFK Medical Center, where Amy had surgery in the fall of 2019 and continues to receive follow-up care under the watchful eye of Jawad Kirmani, M.D., director of JFK Neuroscience Institute’s Stroke and Neurovascular Center.
“Amy is a unique case in the sense that she’s young and still has her whole life ahead of her,” Dr. Kirmani says. “This trial has given her hope and renewed energy to participate in life.”
Although neither Amy nor Dr. Kirmani knows whether Amy received stem cells or the placebo, both are optimistic.
As it turns out, they have good reason to be: Amy already has shown tremendous progress. Just a month after her surgery, she found she could relax the fingers on her left hand, which were previously clenched in a permanent fist, and lift her left arm over her head.
“She had a dramatic and noticeable improvement,” Dr. Kirmani says. “We didn’t have to do a deep neurological exam to notice the difference. It was very obvious.”
Amy attributes her progress as much to her doctors as to the stem cells she thinks she received. “Everyone at JFK has been really great. I wouldn’t have made it this far without them,” she says.
As far as she’s come, however, she’s determined to go even further. “I hope that I get back to 100 percent,” she says. “I just want my life back.”
Next Steps & Resources:
- Hackensack Meridian Health’s Neuroscience Institutes (JFK, Jersey Shore and Hackensack) are all accredited by The Joint Commission as Advanced Comprehensive Stroke Centers for rapid evaluation and advanced care for stroke patients.
- Dr. Kirmani practices in Edison. To make an appointment, call 732-321-7010.
The material provided through HealthU is intended to be used as general information only and should not replace the advice of your physician. Always consult your physician for individual care.