Sun Sentinel Palm Beach Edition
Rare disease blamed for man’s multiple strokes
The first three strokes were mild. Ricky Ortiz’s speech slurred. His fingers tingled. His face grew numb.
But the fourth left him unable to talk.
Ortiz, a manager at a Walmart north of Tampa, was working last October when it happened. He became nonverbal and suffered a seizure in the store’s back room. A colleague was with him.
“I was just staring at her, trying to get words out, but I couldn’t,” Ortiz said.
An ambulance rushed him to St. Joseph’s Hospital. The 40-year-old Lutz man had experienced two strokes in 2020 and a third in August. Why was he having so many?
The culprit was a condition called moyamoya disease, a rare disorder in which arteries supplying blood to the brain become blocked. It can lead to strokes and fatal hemorrhages.
At first, Ortiz’s father was stumped as he searched for a doctor familiar with the disease, which is more common in Japan and other Asian countries. But instead of flying over the Pacific Ocean to get treatment, Ortiz only had to cross Tampa Bay.
A neurosurgeon at HCA Florida Largo Hospital specializes in the condition. He recently performed two operations on Ortiz, who is recovering at his dad’s house in Ruskin.
“It was a blessing,” said Daniel Ortiz, 61, who works for the U.S. Social Security Administration. “I’m reaching out all across the world, and all across the country, and right in my backyard I’ve got this young, talented professional who was able to perform the surgery.”
Moyamoya means “puff of smoke” in Japanese, according to the National Institute of Neurological Disorders and Stroke. As arteries at the base of the skull become blocked, the body tries to compensate. Tiny, weak blood vessels develop, which look hazy on X-ray images.
The disease was first noted in Japan in the 1950s. It often affects kids and adults in their mid 40s. Fewer than 1 in 100,000 people develop it each year, experts say. The Tampa Bay Times could find no data on Florida cases of the condition.
Genetics appear to play a role in who contracts the illness, research shows. In one Japanese study, 12% of patients had a family history of moyamoya disease.
Why Ortiz developed the ailment remains a mystery, said Abilash Haridas, the surgeon who treated him.
No relatives have it.
A neurologist at BayCare Health System initially diagnosed him in August. Afterward, Daniel Ortiz stayed up until 1 a.m. searching Google to learn more.
Another son of his died at the age of 14 from a rare form of cancer. He vowed to do everything he could to prevent a similar fate for Ortiz, who loves video games and puzzles and has worked at Walmart for 20 years.
In September, the BayCare neurologist referred the family to Haridas, who grew interested in moyamoya disease in the 2000s. He calls it an “insidious” ailment that “comes creeping over your lifetime.”
Fewer than 100 U.S. doctors regularly treat it, Hardias estimated. He did two surgeries on Ortiz, one in November and the other in January.
He performed what’s known as “cerebral bypass” procedures, creating different routes for blood to reach the brain. He made incisions above Ortiz’s temples. Then, he cut vessels that normally supply blood to the scalp and used extremely small stitches — each thinner than an eyelash — to connect them with vessels in the brain.
The first operation lasted almost eight hours, Daniel Ortiz said. The second, about five. The benefits largely outweigh the risks, according to the Mayo Clinic.
The procedures are “very challenging” and it takes years to become comfortable doing them, Haridas said. He has performed cerebral bypasses on close to 100 patients in his career.
“This is one of the few surgeries where you’re actually creating something completely new,” he said, “which is the coolest thing for me.”
Ortiz, so far, hasn’t suffered another stroke. He needs speech therapy and is trying to get long-term disability benefits. But he hopes to return to work soon.
“I feel not 100%,” he said. “But I feel like myself again.”