This is Marie writing this note-
The recent AAN presentation on a study evaluating CCSVI apparently revealed that there isn't any CCSVI to speak of in MS patients-or any patients for that matter. Like others before them the authors of this blinded study claim that they used experts in doppler ultrasound in to evaluate people with MS and others to see "if" CCSVI exists.
It's those dopplers. The darned dopplers are the achilles heel of CCSVI research. We CCSVI interested patients predicted this problem from 2009 because the first thing we did was try to get dopplers; what we discovered was that traditionally trained ultrasound techs don't see what Zamboni or his trained people see. I even talked about this in my book which I wrote 2 years ago--confusing and misleading results come from poorly done dopplers.
Let me share what I mean. I had dopplers at the U of Wash. vascular surgery department after I sent them Zamboni's papers and explained I wanted to be evaluated for CCSVI. Intrigued they offered to do it for me. They saw vertebral vein reflux (I was excited by that) but not the criteria Zamboni described.
Then I traveled to Stanford after Jeff to become the 2nd person Dr Dake evaluated and treated at Stanford. Since he was just beginning his observational work, he sent me for dopplers in their ultrasound department. He explained to the tech exactly what they were looking for and what he thought she should see based on Zamboni's work. She was profoundly unimpressed and with a very terse conversation and abrupt manner performed my dopplers after which she crisply remarked that there was absolutely nothing whatsoever unusual about my findings. According to her my blood flow was totally normal. She said I didn't even have vertebral vein reflux as the UW tech had seen.
The next morning I had my venogram and Dr Dake saw 80-90% occlusion in my jugulars bilaterally. I had about as much space as a linguine noodle for my blood to go through...never mind the entirely "normal" dopplers the day before. I ended up with stents.
Two years after this I had re-check dopplers done by Eric Fiegenbutz of Arizona Doppler. He is owner of several ultrasound clinics, an expert ultrasound tech, and had been extensively trained in the Zambonit style dopplers. He found reflux in my deep veins immediately--one stent was blocked.
I asked Eric about his training and he told me that he tried to do Zamboni dopplers after reading his papers but when he tried to do it he didn''t see what Zamboni had. But instead of assuming Zamboni is full of baloney, he said "I need training so I can see what he is talking about." Eric says what you look for is entirely different when doing dopplers Zamboni style, little blips that are "nothing" by regular standards are diagnostic if you want to evaluate CCSVI.
SO here is what I am wondering as a thought experiment: DOES something dramatic need to happen, to stop the constant flow of poorly done dopplers arrival in the medical literature?
Remember that in the 80's Barry Marshall couldn't get anyone to believe his research that H.pylori caused gastic ulcers. They all thought ulcers were caused by stress, type A personalities, and spicy diets. They knew the h.pylori was in the ulcers--they could see it--but the gastric surgeons who did surgery on ulcers insisted that "obviously" bacteria couldn't live in the acid stomach, therefore the h. pylori colonized the ulcer AFTER it had formed (from spicy food and stress of course).
So what did Barry Marshall do? He took pictures of his healthy stomach with a scope then drank h. pylori. Then several weeks he later took new pictures of his stomach showing the newly developed ulcer. That ended the ulcer debate; game over.
Do we need to "drink the CCSVI" to prove it?
Here's what I imagine-what if someone like Zamboni or even his doppler person Menegatti or someone else (Fiegenbutz?) agreed to do dopplers on a set of patients....and these patients would also be tested by untrained ultrasound techs who consider themselves expert but not Zamboni proponents. Document these people doing the work on camera and make sure the tester can't guess the diagnosis (no wobbly walkers going to the doppler table--do that before the doppler person comes in). Make it so that anyone who watches this video can see that the trained person is detecting something that the old style "expert" just can't.
Then watch the sparks fly as the trained person detects CCSVI in MS patient after MS patient. Even if it turned out to support the BNAC results with only 60% of MS patients positiive and some healthies showing CCSVI, it would show that training is critical and that Zamboni style dopplers see something others just don't.
Would we be talking about this bold move 20 years from now and how it was "game over" for doppler studies criticising CCSVI?
A girl can dream.....