The fictional Three Musketeers faced an evil villain with sabers and swagger. The Three MS-Kateers recently took on their own nemesis — multiple sclerosis — with their own come-what-may brand of bravery and bravado.
Darrin Umbarger, Julie Birrer and Steve Lusty, classmates at Pendleton High School in the ’80s, recently traveled to San Diego to undergo a controversial procedure that has galvanized the MS community and drawn skepticism from neurologists.
The procedure, dubbed liberation therapy, aims to increase blood flow from the brain with balloon angioplasty. An Italian vascular surgeon, Paolo Zamboni, championed the procedure after he found that 90 percent of MS patients he examined had a condition called chronic cerebrospinal venous insufficiency (CCSVI), where blockages restrict blood flow from the brain. Zamboni, whose wife has MS, noticed iron deposits where the blood backflowed into the brain.
The trio underwent liberation therapy about a month ago.
Umbarger was awake for the procedure, calmed by a muscle relaxant and anxiety medication as his doctor used a balloon-tipped catheter to open partially-blocked jugular and azygos veins. According to pre-tests, Umbarger had 70 percent blockage of one jugular and 85 percent of the other. His azygos vein was 40 percent blocked. Umbarger said he felt no pain as the doctor worked.
“My left ear popped — that’s the only way I knew they were in there,” Umbarger said. “It only took 45 minutes to an hour and then I could start the rest of my life.”
He noticed one positive change immediately as he lay on his gurney afterwards. His left side, which normally is ice cold, felt warm. His left foot looked pink instead of light blue. Afterwards, as he and his wife Carol got a Smashburger, Umbarger noticed better balance and less fatigue. After touching down at the airport, Umbarger actually walked to the front of the airplane by grabbing seat tops instead of relying on a fold-up wheelchair. At home, he continued gaining mobility.
“I was in the kitchen one day when I look over and Darrin is standing by himself,” Carol said. “He raised his arms over his head, leaned over and touched the floor.”
His fellow MS-Kateer, Julie Birrer, has struggled with MS for 18 years and can’t work because of the constant fatigue. Her first sign of improvement came that afternoon as she and her husband shopped at the mall. Normally, Birrer, after half an hour on her feet, becomes wobbly and fatigued. That day, she shopped for two-and-a-half hours before her husband begged off.
“My balance is so much better,” she said. “My stamina is so much better.’
Numbness below the waist, however, persists.
Steve Lusty, the last MS-Kateer, traveled to San Diego with his mother, Alice Nelson, and his stepfather, Sen. David Nelson, R-Pendleton, after following Zamboni’s research for several years. After the procedure, Lusty noticed changes.
“I felt as if circulation had returned to my legs,” he said. “I could feel my feet and fingers.”
In the next few weeks, he detected subtle balance improvements and a surge of energy.
Sen. Nelson, initially skeptical, marveled at the results.
“He got feeling back and got rid of his brain fog,” he said. “You’ve got to be a believer when you see this happen.”
Dr. David Hubbard, the neurologist who started the Hubbard Foundation where the 3 MS-Kateers were treated, lobbied Nelson before the procedure. “He said, if this thing turns out well, would I spread the word?” Nelson said.
The senator has done just that, lobbying the president of Oregon Health & Sciences University for local testing and chatting up physicians.
Not everyone in the medical community is convinced. Even the National MS Foundation is withholding judgment until research the group funded proves efficacy. One patient died after the procedure and another required open heart surgery after a stent fell into the heart.
Arlene Hubbard, wife of David and coordinator at the clinic, said she expects neurologists to eventually embrace the procedure.
“This is science happening,” she said. “The lack of curiosity concerns me, but I think, slowly but surely, they’ll come on board.”
She and her husband became interested in the possibilities after their son Devin was diagnosed with MS. After reading about Dr. Zamboni’s study, they had Devin tested for CCSVI and found blockages. Devin, 28, had liberation therapy last May.
“Our son has been fine since May 2010,” Hubbard said.
Umbarger hopes to build his muscles to a point by spending time in his own personal “Club 24” in the back of his house. For now, he will enjoy his newfound mobility and stamina. He said he is indebted to friends and family who donated the $10,000 for the therapy.
“I feel like a real boy now,” he said, flashing a huge grin, “like in Pinocchio.”
http://www.eastoregonian.com/news/controversial-surgery-gets-results/article_5efd0f44-4c22-11e0-94c2-001cc4c002e0.html