02/01/10 - At 57, Terry Horner loved playing golf and tinkering with cars. He was looking forward to his daughter’s wedding and could not imagine that his episodes of dizziness and faintness would lead to a surprise diagnosis that would change—and save—his life.
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Dr. Jeffrey Marogil shows Terry Horner images of his heart.
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“I knew something wasn’t right. But my daughter’s wedding was coming up, and I didn’t want to spoil her special day,” he said about postponing his doctor’s visit.
But Horner eventually made an appointment with William Seiden, M.D., his NorthShore University HealthSystem (NorthShore) primary care physician, which resulted in a cascade of diagnostic tests and appointments with specialists. Like putting together pieces of a puzzle, his physicians—who also are on faculty at the University of Chicago Pritzker School of Medicine—confirmed and treated a disorder that was thought unlikely given Horner’s age, fitness level and good health.
Upon examining Horner, Dr. Seiden ordered a stress test. After running the stress test and an electrocardiogram that showed some abnormalities, cardiologist Jeffrey Marogil, M.D., called Dr. Seiden and sent Horner to Evanston Hospital for a cardiac MRI (magnetic resonance imaging).
Although he had never seen Arrhythmogenic Right Ventricular Dysplasia (ARVD) outside of a textbook, Dr. Marogil suspected that Horner could have this rare, progressive disorder of the cardiac muscle that causes abnormal heart rhythms. After cardiologists Federico Mordini, M.D., interpreted the MRI and Michael Salinger, M.D., conducted an angiogram, the ARVD diagnosis was confirmed.
“ARVD is estimated to affect less than .01 percent of the population and typically men,” Dr. Marogil said. “With ARVD, the muscle of the heart’s right ventricle is replaced by fat and fibrosis, causing the electrical system of the heart to go awry. Instead of a normal and steady heartbeat, the heart beats with a disorganized pattern that puts people with ARVD at high risk for having a sudden, fatal heart attack.”
It can be difficult to treat because there is no single test that can definitively make or exclude the diagnosis. “No one test clinches it,” Dr. Marogil said. “It’s important to put everything together.”
Symptoms can be similar to other heart disorders, so it takes a skillful physician evaluating a patient’s medical history, physical exam and various cardiac tests to accurately pinpoint the problem. Horner also learned that the disorder is genetic, giving him important information to share with his family.
Informed Decision
“Terry was very lucky that Dr. Marogil investigated the abnormal results of his stress test further,” said Alex Ro, M.D., an electrophysiologist at NorthShore. “Very often, patients with ARVD are not diagnosed properly.” In this case, the diagnosis was only the beginning because there is not just one way to care for patients with ARVD.
“There are not vast textbooks on how to treat ARVD, but the American College of Cardiology and the American Heart Association have guidelines that assist us in providing patients with good information to make an educated decision,” Dr. Ro said.
Horner’s MRI showed evidence of an aneurysm on the right side of his heart that placed him at an even higher risk for a cardiac arrest. After discussing treatment options, Dr. Ro recommended that Horner receive an implantable cardioverter-defibrillator (ICD), commonly called a cardiac pacemaker, to regulate his heartbeat. He performed the surgery to implant the device.
“There really wasn’t a choice to have the ICD implanted,” Horner said. “However, the realization that your life is going to change doesn’t really sink in until you review the list of restrictions. You have to avoid strong electrical or magnetic fields, including ignition systems and arc-welding equipment.”
Such restrictions meant adjustments to his work managing a fleet of tractor trailers, as well as to his hobby of restoring vintage Corvettes. Horner has resumed other hobbies, however. “I’m playing golf again and now have an excuse for my poor game,” he joked. Kidding aside, Horner is grateful for the care he received at NorthShore. The physicians and clinical staff, including nurses and radiology technicians, worked collaboratively to provide him with the best possible care.
“I never anticipated having anything wrong with me, let alone a heart condition,” he said. “The doctors and staff offered numerous resources for me to understand my situation. It was these simple acts of kindness—taking time to explain in layman’s terms what was happening—that made all the difference in the world.”
For more information about cardiac care at NorthShore, call 847.492.5700 (Ext. 1288).