Moyamoya Patient Finds New Hope

The Best of the Best

After decade-long medical mystery, patient with Moyamoya finds new hope, gives back to BIDMC

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Shortly after his 27th birthday, Corey Repucci was living the life he'd always wanted. He was newly married to the love of his life, Hillary, and enjoyed his job as a civil engineer. One morning in 2007, Corey experienced a sense of weakness on the entire left side of his body. Scared, he and Hillary went straight to his primary care physician's office. He had an awful feeling something wasn't right. His intuition was correct: Corey had suffered a series of thirteen strokes on the right side of his brain. "I remember thinking 'How did this happen? Aren't I too young, too healthy?' It was shocking and devastating," says Corey.

After spending a week in the hospital, Corey was diagnosed with a narrowing of the middle cerebral artery in his brain, or vasculopathy. He and Hillary soon learned that this condition would be managed with daily medication and regular follow-up with his neurologist. Their lives moved forward, and in 2010 and 2013, they welcomed two daughters, Annabelle and Olivia. Everything went smoothly for the Repuccis until eleven years later when, out of nowhere, Corey developed concerning symptoms. One summer morning, he had trouble speaking and stumbled over his words, as though he had marbles in his mouth.

Corey and Hillary rushed to the local hospital, where he relived his experience from a decade prior. MRI results confirmed his worst fear: Corey had again suffered multiple strokes, but this time on the left side of his brain. After a week-long hospitalization, he was discharged with the same diagnosis, which didn't sit well. "I thought, 'How could there be no way to prevent this from happening in the future?' It didn't make sense," says Corey, whose recovery was more challenging this time around. To reduce the risk of additional strokes, Corey's neurologist prescribed several medications and directed him to refrain from exercise—which was difficult for the lifelong athlete. "I gained weight, couldn't sleep, and became depressed," says Corey. "It was hard to lose such a central part of my identity."

A month later, during a follow-up appointment, the couple was surprised, yet relieved when Corey's neurologist informed them that he believed that his diagnosis was incorrect. In actuality, Corey was suffering from Moyamoya, a rare, progressive disease that causes narrowing of central arteries in the brain. They finally had an answer—albeit a difficult one to hear, given that Moyamoya is incurable. Corey was referred to Christopher Ogilvy, MD, at Beth Israel Deaconess Medical Center, to discuss surgery, which is currently the only known way to help prevent the progression of Moyamoya. "As a father, I needed to do everything possible to be there for my family," says Corey. "I immediately made an appointment with Dr. Ogilvy, and that was one of the best decisions of my life."

Corey and Hillary immediately felt a connection with Dr. Ogilvy. "He was personable, patient, and thorough," says Hillary. Dr. Ogilvy also explained that surgery would not cure Moyamoya, but rather would reduce the possibility of future strokes. "The thought of undergoing brain surgery was frightening," says Corey, "but we were thankful that after eleven years, we finally solved my medical mystery."

Corey and Hillary elected to move forward with two separate surgeries. "The first surgery went so well that I was sent home after just two nights in the hospital," says Corey, who went back to working part-time a month after his second surgery. "I never thought I would return to any sense of normalcy that soon after brain surgery," says Corey. "Dr. Ogilvy, nurse practitioner Deidre Buckley, and their team were incredible."

Two years later, Corey is almost back to working full-time and is active in several support groups. The couple is extremely passionate about giving back to BIDMC, raising awareness, and connecting to other patients who are navigating a Moyamoya diagnosis. "I find it cathartic to share my story with others and spread positivity and hope," says Corey.

While his journey was extremely challenging, Corey is tremendously grateful to BIDMC. "Dr. Ogilvy is the best of the best," says Corey. "Everyone on my care team is a genuine human being—they are my friends." Adds Hillary: "Our family will be forever grateful for BIDMC's remarkable care during such a difficult time."

In 2020, Dr. Ogilvy and his colleagues in the Brain Aneurysm Institute established BIDMC’s first-ever Adult Moyamoya Center of Excellence. The center brings together expertise in stroke and vascular neurology, neurosurgery and radiology to better treat, diagnose, and understand Moyamoya disease. In partnership with the Moyamoya Foundation and the Repucci family, an educational seminar for healthcare providers and Moyamoya patients will take place on May 6th from 6:00 – 9:00 pm. For more information please visit www.bidmc.org.