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Thursday, April 7, 2011 8:51 AM | Ken Torbert Volg link

Last Saturday morning, I joined about 200 other marchers for a 3-mile loop around Klahowya Secondary School to recognize and honor the struggle of those fighting multiple sclerosis.


I walked about a half-mile with Terri who was walking with a broad smile and a well-used walker. She spoke of the various medicines she was taking and her hope for a future free of MS. I spoke with Patty who has been living with the disease for over 10 years. I also spoke with Kara, a young single mom who was diagnosed when she was only 18 years old. I spoke with Jack, Hoyt and Kathleen, each of whom had relatives suffering from the disease.


Before and after the walk, the large Klahowya room was filled with music and food. Joyful, impromptu dancing mixed with serious chats about how folks were doing. Teams were dressed in unique costumes and T-shirts.


While I don't have any immediate relatives with MS, I do have a close friend with the disease.


I was with Ben and his family on Saturday.


Ben, an independent film maker in his 40s with four children, was diagnosed with MS about four years ago. Four months ago he could barely walk, even with the aid of a walker. His short driveway was an impossible distance. Each time I visited he was getting worse. The obvious was omnipresent — a steady and likely rapid decline to even greater pain and total disability.


Ben knew what was at stake for him and his family, and he took it upon himself to study all the available research and, with little help, to address his condition.


Ben then asked his father for the $8,000 to travel to Orange County, California and have a procedure. He laid down on a gurney and 40 minutes later he got up and walked out of the room a different man, one essentially pain-free, clearheaded and totally mobile.


To me what happened was a modern miracle.


On Saturday, he could have jogged the 3-mile MS "walk." He is still pain-free, clearheaded, and you would never know he has MS ... if he didn't tell you.


That 40 minutes in Orange County was why his family and I were a team with a unique T-shirt on Saturday. Across the front it read, "CCSVI is the hope in the cure for MS ... " Across the back it read, "have you been scanned?"


Most of those I met at the MS walk had never heard of the CCSVI procedure that Ben had done, and those that did knew it wasn't at all universally approved, nor was it regularly covered by any medical insurance. Ben was everywhere in the crowd on Saturday. He wasn't claiming there was a "sure cure," just telling about a possible option that few knew about, and that had positive results for at least one person — him.


As I understand from talking with Ben and doing some Internet research, CCSVI is a hypothesis to explain the cause of MS as the conscripted flow of blood in veins. The procedure that Ben had done is a variation of an angioplasty to clear clogged blood vessels that I and millions of others have had done relative to heart conditions.


To say the least, the procedure is controversial and is not widely approved. However, it appears anecdotally that the procedure has yielded very high success rates in many patients, at least marginal results in others, and only a very few adverse results. For many it appears to be an option that should be considered, and one to be presented with its attendant risks to the appropriate patient by medical experts.


The controversy over the procedure raises some broad questions concerning both potentially conflicting medicine specialties, as well as the obvious delays in gaining FDA approval.


As to those conflicting medical specialties, gaps and thus often conflicts appear in cross-disciplinary issues; in the CCSVI procedure for treating MS, there are potential conflicts with radiology, vascular surgery and neurology.


Just as it's impossible for me to keep up on all new legal developments even in civil law, it's surely many times more difficult for medical personnel to keep up on all that is new and uncertified in even part of the human medical world. Even so, the failure to spread the word about this CCSVI procedure, which apparently has been used extensively in Europe and now in the U.S., seems perhaps just another example of what sometimes happens when money, drugs and medical specialties intersect.


My hope is that Ben will continue to improve and, by producing a film documentary on CCSVI, help spread the word about this procedure. Perhaps with appropriate caution and further trials, physicians and the right patients will discover potential new hope — the beginning of the end for MS and its related ills.


Larry Little may be reached at lawrencelittle@wavecable.com.