Local MS patient finds help far away

Justin Wilbert, 36, of Somers had never been on a commercial airliner before he flew to New Delhi, India, in August — on borrowed money — for a radical surgical treatment for multiple sclerosis.

He was not disappointed by the results.

“My vision improved a ton and my legs don’t feel like they’re 50 pounds and full of concrete,” Wilbert said. “My pain is dramatically decreased.”

Although his neurologist warned him that the balloon angioplasty procedure had not been studied or approved for multiple sclerosis by the FDA, Wilbert decided to take the risk based on numerous Internet testimonials from MS patients around the world. From his perspective, he had little to lose.

“I went two years when I could hardly see — I was in and out of blindness,” he said. “I became bedridden and completely blind.”

Along with taking his sight, the disease had numbed his hands, feet, legs and torso and subjected him to agonizing nerve pain. Wilbert became confined to a wheelchair about two years ago.

It was a devastating development for a young man with an active lifestyle just five years ago. After growing up and attending Bigfork schools, Wilbert worked in Oregon for a few years, then returned to the Flathead Valley in 2003 to work with his stepfather in a tile-setting business.

He vividly remembers the day symptoms of the disease first appeared just before his 31st birthday. Wilbert and his girlfriend Katie Halcro were headed out of town on vacation.

Near Hot Springs, he noticed something wrong with his right eye.

“You know when you’re going down the road and you see heat waves?” he asked. “I saw them for the whole trip. When I went back to work, it was so bad I couldn’t read a tape measure. Then I went completely blind.”

Wilbert went to an eye doctor, then an eye specialist who referred him to a neurologist. After tests including an MRI that revealed lesions on his brain and spinal column, he received a diagnosis of multiple sclerosis on Oct. 15, 2005.

From that day forward, Wilbert began searching for a cure for this central nervous system disease that damages patches of protective myelin sheath covering nerve fibers in the brain and spine.

With electrical impulses disrupted by damaged myelin, multiple sclerosis manifests as a variety of symptoms such as fatigue, visual and speech impairment, numbness, nerve pain, weakness and much more.

“Every person has it differently,” Wilbert said. “My sight went quickly and I continued to deteriorate. My walking got really bad, then I had no feeling in my hands.”

He began spending 23 1/2 hours a day in bed from the overwhelming fatigue, getting up just long enough to eat a small amount. His weight plummeted by at least 50 pounds.

“One whole summer, I couldn’t use silverware,” he said.

Although Wilbert tried every prescription drug and alternative treatment thought to help, nothing made much difference except Tysabri, a drug with a risk of a brain disease. The disease — progressive multifocal leukoencephalopathy — is rare but deadly and the risk increases after multiple infusions.

“It’s basically a mold that grows on your brain and you become a vegetable,” Wilbert said. “I took it for 36 months.”

He credited Tysabri with getting him out of bed and improving his sight. But Wilbert worried as each infusion of the drug bumped up his risk. Wilbert said he wasn’t afraid to die but he didn’t want to lose his mind in the process.

His search on the Internet for a better alternative was rewarded on Nov. 9, 2009. He watched a Canadian television news show about chronic cerebro-spinal venous insufficiency, a syndrome in which blood flow from the brain and spine to the heart is compromised or reversed, a process called reflux.

“There was a new finding that most people with MS had stenosed (narrowed) veins in their necks,” Wilbert said. “It can be like a twist of a kink or a platelet that grows across.”

Italian Dr. Paolo Zamboni proposed a theory that malformed blood vessels caused toxic iron deposits in the brain, triggering an immune response and degeneration of the myelin sheath.

Treatment begins with angiography to confirm the syndrome followed by a balloon catheter threaded through vessels to the narrowed area, then inflated to open up the vein — called the liberation procedure.

“It’s exactly what they do for heart disease,” Wilbert said. “They go in from the femoral artery.”

Wilbert began researching clinics in the United States, Poland, Bulgaria, India and Costa Rica. He was on a waiting list for a New York clinic when he discovered Safemedtrip.com and Medanta Medicity, a New Delhi hospital that performed the liberation procedure with no waiting list.

“They arranged everything,” he said.

His neurologist expressed his reservations about the procedure and his safety but helped him by writing a letter to expedite his visa.

A friend loaned him $6,500 to cover for the procedure and about $5,000 more for travel and hotel expenses. According to Wilbert, a doctor who performs the same half-hour operation in San Francisco charges $80,000.

On Aug. 29, Wilbert and his girlfriend boarded a plane for a 30-hour flight to India.

“I never went outside in India. They don’t have handicapped accessible anything. The poverty is unbelievable,” he said. “The people were unbelievably nice and the hospital was super high tech. They all speak pretty good English.”

Wilbert was admitted to the hospital on Aug. 31 for a full range of imaging over three hours, followed by the liberation procedure.

“It’s a super simple thing that should be available to everyone,” he said. “It was painless.”

Wilbert felt immediate results with a feeling of warmth returning to his feet and sensation to his hands. In his hotel room, he was astonished to see his image in a mirror for the first time in years.

“I thought, ‘Am I really that scrawny,’” he said.

His appetite and energy soared by the day after the procedure as his pain diminished. Wilbert said he went from taking three to four pain pills a day to three to four a week.

“When I first got back from India, I loved going to bed,” he said with a smile. “I couldn’t wait to see what miracle I would find in the morning.”

After returning in September, he has had one treatment with Tysabri. The next week, he consulted with his neurologist and stopped his infusions.

Wilbert said his improvement has continued at a less dramatic pace. He has no regrets about the operation and would do it again if his blockages return.

“Where mine were, they almost never re-stenose,” he said.

His friends have organized a benefit Saturday at Buns by the Lake in Somers to help repay the cost of the trip to India as well as to spread the word about this procedure. Wilbert said patients in Canada and Australia are holding rallies to get government approval for this operation.

When people question if his results are simply from the placebo effect, Wilbert said he doesn’t care why it worked.

“I just know it works and that’s all I know,” he said. “I think a person with MS would be a fool not to get this.

Wilbert welcomes people to call him for details at 857-2235.

Reporter Candace Chase may be reached at 758-4436 or by e-mail at cchase@dailyinterlake.com.