To see Leonard Shaw in action in 2017, you’d never have guessed that he was 70 years old: The retired railroad worker’s days were filled with fishing, hunting and taking care of the five-acre property where he lives with his wife, Donna, in Valparaiso, Indiana. When he started having debilitating headaches, a local neurologist diagnosed them as migraines and treated them with Botox injections.
On a hunting trip to Ohio that fall with his son and nephews, Leonard collapsed. Taken by ambulance to the nearest hospital, he had emergency surgery to evacuate blood in his brain that had caused a bleeding type of stroke. Donna, who grooms, trains and shows dogs, dropped everything and drove six hours to Ohio. “When I walked into that hospital, I didn’t think he’d make it through,” she remembers. “He was on a ventilator, in a coma, with a bunch of machines hooked up and beeping.”
Leonard was discharged a week after surgery and went by ambulance to a rehab facility in Valparaiso. His Ohio surgeon told Donna, “If you have any problems after you get home, call Rush. They’ll be the best for him.” She needed to take that advice right away: When she arrived at the rehab facility, she found that Leonard had been admitted to the emergency room, disoriented and combative. She called Rush University Medical Center, and he was transferred there via ambulance.
Expert treatment for a rare condition
At Rush, he saw neurologist Rima Dafer, MD, MPH, who eventually diagnosed him with a rare condition called cerebral amyloid angiitis with related inflammation (CAA-RI). “This is a condition that’s destructive to the arteries in the brain,” Dafer explains. “Proteins called amyloid build up in small blood vessels, causing them to become brittle and leak.” Leonard’s condition had been developing for years, Dafer says, and was causing his headaches, but CAA-RI typically isn’t diagnosed until it causes a major problem like behavioral changes and stroke.
Dafer prescribed high doses of prednisone to calm the inflammation in Leonard’s brain, eventually tapering it down to a low dose that keeps the inflammation from recurring. He did well for several months, until a new issue arose. During an annual physical, Leonard’s primary care physician noted that his blood pressure was high and he had an abnormal heart rhythm. An electrocardiogram (EKG) showed that Leonard had developed a condition known as atrial fibrillation, or AFib.
The local cardiologist scheduled Leonard for cardioversion — a procedure that shocks the heart back into rhythm — and a lifetime prescription for blood thinning medication. Apprehensive, Donna called Dafer to discuss the plan. “Dr. Dafer said, ‘that’s not an option, and we need to get you back up here to meet with our cardiologist,’” Donna says.
Dafer was alarmed at the plan to put Leonard on blood thinners. AFib can cause blood to pool in the heart and form clots that can break off and travel to the brain, where they block blood flow and cause a stroke. Blood thinners, or anticoagulants, are a common treatment for AFib because they reduce the blood’s ability to clot — but because CAA-RI causes blood vessels in the brain to leak, taking blood thinners could lead to catastrophic bleeding.
A collaborative approach in a unique clinic
The Shaws returned to Rush to meet with Dafer and Clifford Kavinsky, MD, PhD, a cardiologist who specializes in minimally invasive, catheter-based heart procedures. Dafer and Kavinsky work together in Rush’s comprehensive Stroke-Cardiology Clinic, where cardiologists and neurologists collaborate to treat and prevent strokes that are caused by heart conditions.
The clinic is the first of its kind in Chicago, created to address the fact that heart issues often affect the care of neurologic patients, and neurologic considerations are important when treating many heart conditions. “In the past, it was an issue when we saw patients in Cardiology and they also needed to see a neurologist — sometimes it could take a long time to get that other appointment,” Kavinsky explains.
Patients who come to the Rush clinic see a cardiologist and neurologist at the same time, and the specialists collaborate to make a customized treatment plan. “We’re able to talk with each other and with the patient about the benefits of any potential intervention right on the spot,” Dafer says.
For Leonard, that meant finding a way to reduce his stroke risk without blood thinners. “The alternative for people who couldn’t take blood thinners used to be simply `to live with the risk of stroke,” Kavinsky says. Now, FDA-approved devices that are placed in the heart with a minimally invasive procedure can reduce stroke risk just as effectively as blood thinners.
Catching clots before they’re a problem
The left atrium, or upper left chamber of the heart has a small pouch of tissue called the left atrial appendage (LAA). In people with AFib, blood can collect there and form clots. The implantable Watchman device, an umbrella-shaped filter about the size of a quarter, closes off the LAA and catches clots before they leave the heart.
In the spring of 2019, Kavinsky performed an hourlong procedure to place a Watchman in Leonard’s heart. While Leonard was under general anesthesia, Kavinsky made a small incision in a vein near his groin, inserted a thin, flexible tube called a catheter with the Watchman device at its tip, and threaded the catheter up through the blood vessels to the heart. He then placed the device at the opening of the LAA, where it expanded to seal off the pouch. Blood can flow in and out, but any clots that form are trapped harmlessly.
Leonard spent the night in the hospital and was able to head home the next day. For a few weeks afterward, until tissue grew over the Watchman to permanently seal off the LAA, he took an antiplatelet drug — a medication that keeps blood platelets from sticking together and forming clots. Frequent phone check-ins from neurology nurse Natalie Sikorski, RN, reassured Donna and kept Dafer and Kavinsky updated on Leonard’s recovery. During the COVID-19 pandemic, he has been seeing Dafer for follow-up visits via telehealth.
While Leonard has to deal with some cognitive issues related to his initial stroke, he has experienced no more stroke activity since the Watchman was placed. “He looks good and he’s feeling good,” Donna reports. “He’s active, mows the yard, still bowhunts on our property. On the whole, he’s really doing well.” He takes medication to treat high blood pressure and prevent seizures, plus a low dose of prednisone for inflammation and a daily baby aspirin for its antiplatelet properties.
Donna also says that the Shaws couldn’t be more thankful for the care Leonard receives at Rush. “It was a roller coaster at first,” she says, “but the Rush experience was really different. If I ever have a health issue, I’m going to Rush.”
