11/18/10 My thoughts on Conspiracy and the future of CCSVI

I have been asked alot lately about Dr. Michael Arata and Pacific Interventionalists, and why there is so much resistance to CCSVI if it is so successful. I am not a conspiracy theorist, but I can certainly understand how people would believe the CCSVI wave of evidence is being squashed by the powerful drug companies. Big Pharm retaining their profits is a good, simple explanation to a disabled person on why they (we) are being oppressed. The Canadian Government certainly hasn’t helped the position so far, but I don't think the idea holds any water.

I have a good friend who is an anesthesiologist in California who is as mainstream as anyone when it comes to protocols and practices in medicine. He holds a license to literally play God with hundreds of patients a week, and he uses some of the most potentially lethal drugs in the world on a daily basis. His underlying medical degree is as an osteopath, so his training and belief in blood flow is there to begin with. He was one of the people I relied on heavily as I researched CCSVI. Thrilled that I was visibly walking better, we chatted about this very topic last weekend drinking a beer while gazing over the Pacific Ocean.

He believes, as I do, that an overwhelming deluge of evidence will overcome the resistance in time, but the hype has to be removed in favor of science. When CCSVI and the theory of opening veins ends up being proven in scientific settings over the next few years, like anything else in the medical world, it will end up being part of a defined protocol. Remember, Dr. Zamboni had said early on there was a 100% correlation with CCSVI and everyone who has the procedure will get substantially reduce or get rid of their disease (or something to that effect - sorry if I am misinterpreting his position). That built up a lot of hype as the be-all end-all cure, so as more and more people began to test the theory, some holes began to come out.

Some people didn’t see immediate improvement, and some didn’t have narrowed veins. Some who have had the CCSVI liberation have re-stenosed. But were those people all confirmed MS patients? Were there other underyling or contributing factors? Is there a single, unifying element? MS is the "maybe, might be, could be" disease to begin with and it shows up in all of us different ways, so it is pretty apparent there was not going to be one smoking gun in all cases. Once the holes are filled and the evidence becomes more clear, protocols will be defined and resistance will fade in favor of good medicine.

That said, I think it's a bit ridiculous at this point that people in the US and Canada would be forced into overseas options. Not that I have anything against overseas hospitals, but why not have all this great science obtained here at home? 400,000 people in the US and 70,000 people in Canada is quite a good statistical sample.

As to travelling thousands of miles to meet with a doctor you don’t know to do an “experimental” procedure, I agree with the nervousness and underlying concerns. Doctors like Michael Arata in LA are among the pioneers, plain and simple, and his practice bears a lot of risk. I would predict virtually every interventional radiologist and phlebologist (and potentially vascular surgeons) in both Canada and the US will have CCSVI incorporated into their practices within 5-10 years and CCSVI will be the mainstream, unifying element in MS. But for now, we have about 10-20 choices to open our veins, most of which are overseas.

I decided even if it didn’t work, or if Dr. Arata was not forthright, etc. etc. etc. that the risk was still well below the potential reward. I decided that going to LA was a good choice, because the surgery center was right across the street from an Emergency Room. I really didn't think it would get to that level, but that idea helped me in my "worst case" analysis.

CCSVI isn’t going away anytime soon, and as more and more doctors get on board, we will see more and more adjustments and refinements to the surgery and testing procedures over time. And of course, once the FDA and the insurance companies are on board, the cost probably will come down to a $3,000 outpatient procedure, being done as routinely as any other existing surgery my anesthesiologist friend witnesses daily. That will be a great thing for MS. Until then, those of us who don’t want to wait have a pretty viable option in Southern California.

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