Air Force special-ops trainee Paul Casas, on being diagnosed with Moyamoya disease, a rare brain disease.
Paul Casas was in the midst of special-ops military training in Texas last year when he noticed that things weren’t quite right. Despite putting in long hours of study, he repeatedly failed academic testing. His left arm went numb. He suffered a three-week-long headache. He forgot both of his daughters’ birthdays.
After being urged by his wife, Stephanie, the 28-year-old Air Force trainee eventually checked himself into the San Antonio military hospital on base. After several MRI and CT scans, Casas was diagnosed with Moyamoya disease, a rare brain disorder that causes strokes and hemorrhaging due to restricted blood flow to the brain. Hospital officials, however, told Casas they were not confident in treating his case.
“When I was first diagnosed with the disease, the scariest part of it was not even the diagnosis, but trying to find information and trying to find help,” Casas, a Miami Lakes native, said in an interview at Jackson Memorial Hospital. “They wanted to let me go, and let things take its course.”
Casas and his wife immediately sent the scans to hospitals across the country, encountering many facilities that were hesitant to take on the rare case. While several doctors told Casas and his wife to “wait it out” until he had a stroke or started hemorrhaging, one University of Miami neurosurgeon said he was willing to see Casas.
“As soon as the military gave Paul permission to leave, we drove from San Antonio to Miami,” said Stephanie, also from Miami Lakes.
Dr. Jacques J. Morcos, who had experience treating Moyamoya patients, performed a four-hour surgery at Jackson Memorial Hospital on May 24, the Wednesday before Memorial Day, rebuilding two arteries to supply blood to the right side of his brain. The procedure is known as double-barrel superficial temporal artery to middle cerebral artery [STA-MCA] bypass.
Moyamoya disease is named after the Japanese word for “cloud of smoke,” which describes the tangle of vessels formed to compensate for the blood blockage. The disease affects about one in every million people, and is most common in children, women or people of Asian descent, Morcos said at a press conference held Tuesday by University of Miami Health System and Jackson Memorial Hospital. Although it is genetic in origin, Moyamoya is not hereditary.
The bypass Morcos used on Casas is rare and risky, typically used to treat complex aneurysms, strokes and difficult brain tumors, he said. Morcos carved a small bit of skull from Casas’ head, and restored the arteries through the “window” using sutures five times thinner than a human hair.
On May 27, just four days after the operation, Casas was discharged from the hospital. His symptoms melted away and his memory came back almost immediately.
“I feel amazing,” he said. “Before, everything was foggy. Now, I think a lot clearer.”
For now, Casas plans on staying in Miami for another month on convalescent leave to complete follow-up appointments and memory therapy, he said. Once his leave is over, he will likely return to San Antonio and await a medical evaluation to decide whether he is fit to return to active duty.
Morcos said Casas was in better physical shape than other patients he’s seen with the disease, and was spared any permanent brain damage.
“As soon as I saw him in the ICU after the surgery, I knew he was going to be fine. The first thing he asked was if I had lunch yet,” Stephanie said at the press conference.
“He had to miss out on so many things,” she said, including the birthdays of their daughters, Sophie, 4, and Brooke, 1. “Now, he gets a whole new life back. It gives him a chance to see life in a different perspective.”
Samantha J. Gross @samanthajgross