Seeking a Cause

Talking to Robert Cull, one gets the sense that he doesn’t get worked up by much because he trusts that everything will work out. So far it has — with the help of tPA and a high-tech heart monitor. Robert, age 78, is a semi-retired accountant who lives in Chicago with his wife, Loyda. On vacation in Michigan in September 2013, they were napping, and “all of a sudden, something woke me up,” he said. “I felt like I heard something in my head.” He tried to get off the sofa but couldn’t. Loyda asked if he was all right, but he couldn’t talk and couldn’t move his arms or legs. “When she looked at me, she said my eyes were totally unfocused.”

Survivor Robert Cull with his wife Loyda

Loyda called 911. The paramedics alerted the ER in Holland, Michigan, that they had a stroke coming in, and by the time Robert got there, the ER physician was on the phone to the University of Michigan Stroke Unit. After doing the requisite tests to make sure it was an ischemic stroke, they gave him intravenous tPA. “My wife said it was just a matter of minutes before my eyes were focused and I could talk again,” he said. “When they got me to that point, they put me in an ambulance and sent me to Grand Rapids where there was a stroke center.” Doctors kept him there for six days and did all kinds of tests, but none of them identified what had caused the clot at the base of his brain, so the stroke was listed as cryptogenic or unexplained cause.

According to a recent American Stroke Association survey, when a patient’s stroke is considered cryptogenic, it usually leaves the patient and their caregivers feeling anxious, but that wasn’t Robert’s response: “You know, I take those things pretty lightly,” he said. “I figure all you can do is listen to the people who know, follow their instructions, do the best you can do. You don’t control this life, so I don’t think I have any real strong feelings. That’s the way I go through life.”

However, his neurologist did not take his cryptogenic stroke diagnosis so casually. She sent him to Rod Passman, a cardiac electrophysiologist and professor of medicine and preventive medicine at Northwestern University Feinberg School of Medicine. He suggested that Robert wear a 30-day heart monitor. These are small devices that are used to identify heart rhythm problems like atrial fibrillation (AF) that may come and go and may not be detectable during a one-time exam or diagnostic test. Two sticky patches (electrodes) on the chest connect two wires to the event recorder.

Robert’s monitor required him to call in once a day so the monitor could download what happened that day. But during those 30 days, nothing happened.

Passman next suggested an implantable cardiac monitor. These are small electronic devices implanted under the skin that keep tabs on any abnormal heart rhythms. “It’s about the size of a small paper clip, and it’s injected underneath the skin with a local anesthetic,” Passman said. “There are no wires going to the heart, so the procedure takes literally less than a minute to complete with only local anesthetic. Right now we do it in a non-surgical room in the hospital, but I suspect that in the future, people will be doing this in their office.”

Once implanted, the device monitors the heart 24/7 for as long as three years, which is the life of the battery. After Robert’s was implanted in November 2014, he was aware of it in his chest, but he wasn’t bothered or restricted by it. To report the readings from the monitor, Robert didn’t have to do anything. Every night it automatically downloaded its observations wirelessly through a device on his night stand to Passman’s group practice. There the data was reviewed by a nurse who specializes in cardiac devices and then read a second time by an electrophysiologist. “While we don’t get true real-time information, we will know about an episode typically within 24 hours which is a lot sooner than we would ever know otherwise,” Passman said.

These devices were first designed for patients who have passing out spells (syncope). In some patients, these spells can be caused by an abnormal rhythm of the heart that can be sporadic with months or years between episodes. These devices were developed to record abnormal rhythms such as very slow heart rates or pauses in the heartbeat. “It’s only been over the last six or seven years or so that they’ve included algorithms to sense atrial fibrillation, which we know is associated with stroke,” Passman said. “We use them very often, not only in stroke patients but patients with unexplained syncope or patients with a history of atrial fibrillation where we want to know how much arrhythmia they are having. It allows us to see whether our interventions such as medication or ablation have been successful. There are many, many uses of these devices.”

Many patients are unaware that AF is a serious condition, but about 15 percent–20 percent of people who have strokes have AF. Untreated AF doubles the risk of heart-related deaths and is associated with a fivefold increased risk for stroke.

“Patients who’ve had cryptogenic stroke leave the hospital without a diagnosis, and that can be a very scary proposition when you know that you had what could be a life-threatening event. And the mechanism remains unknown despite very extensive and expensive evaluation in about a third of patients,” Passman said.

Robert wanted to make it clear that he was grateful for the expertise of all his doctors along the entire chain of care.

For more information about cryptogenic stroke, see Stroke Connection’s two-part series on the topic and download our free guide for stroke survivors, What’s at the heart of my cryptogenic stroke?

This information is provided as a resource to our readers. The tips, products or resources listed or linked to have not been reviewed or endorsed by the American Stroke Association.

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