Lisa Cooper, a mother of three who lives in Mount Vernon, Wash., has had the "liberation procedure" twice, and despite paying high fees and experiencing disappointing results, she is still a firm believer in Paolo Zamboni's work.
Ms. Cooper first underwent the procedure in San Diego last October and noticed her MS symptoms, including crushing fatigue, numbness and loss of balance, disappeared almost instantly. But a few months later, she says most of the symptoms returned, leading her to undergo a second treatment in her home state earlier this year.
A few months later, she still hasn't experienced any real improvement.
"I'm trying to hang in there, but things are just so frustrating to me," Ms. Cooper wrote last month on a Facebook page for Seattle-area patients interested in CCSVI. "I feel like things are worse now postprocedure."
Ms. Cooper said in an interview she helped pay for the two procedures, which cost about $15,000 (U.S.), by fundraising and soliciting donations from friends and family. Even though it has been many weeks since her second surgery, Ms. Cooper holds out hope she will still see an improvement because she experienced such dramatic results the first time.
"I'm trying to be really, really patient at this point," she said. "I'm waiting."
Ms. Cooper has been told she likely experienced a "placebo effect" after the first procedure, a psychological improvement common among patients who strongly want to believe a treatment will work. But she rejects the notion.
"I'm like, no matter how much I wanted to have my balance restored, I couldn't possibly have willed this," Ms. Cooper said, referring to her improvement after her first surgery. "I can't will my balance to be back."
She knows there are many critics of Dr. Zamboni's theory and the idea blocked neck veins lead to CCSVI. And despite her own mixed results and the high cost of the procedure, Ms. Cooper said it's a small price to pay if there's even a small chance of getting her health back.
"I would do it again in a heartbeat," she said. "Are you desperate enough to save your life? Are you that desperate yet? Carly Weeks