But it's not true, from what he has seen. He's had five patients get the treatment, although there could be more that aren't telling him. Those five have had symptomatic improvement only that lasts for three months only. That's it.
I'm at two months, I say.
We are quite a ways into the appointment and I have not volunteered my list of improvements. He does the courtesy of asking.
I list a few. Fatigue, cogfog. Colors are brighter. My vision improved, six days after the procedure I had to buy new contacts.
There's no reason for any of that, he says. Placebo….
(Aside: he screwed up there. You can't see my worst symptoms because they are the cogfog and fatigue. But I've spend quite a few years now doing a deep study of personal suffering when it comes to these symptoms. This would have been a good time to set aside the debate and to say that, regardless of the reason and whether or not it will last, it is a good thing if I am feeling better.)
He had brought up symptomatic improvement only, I segue to saying that it is a big question to be answered, if CCSVI treatment has any effect on progression or not, that is important to find out.
He talks about how the imaging of these stenoses is so variable. I ask if he'd made it to Hawaii, to AAN, and that a doctor from the Cleveland Clinic discussed a lot of different factors that can affect the imaging, right down to dehydration status. You can do an MRV on the same patient in different states of dehydration and get different results, you can do the same patient on two different days and get different results, according to the Cleveland Clinic doc.
What's needed, according to my neurologist, is an angiography study. Not these imaging studies but the real thing.
I say, well, yes, but you can't do that with healthy controls.
Sure you can, he says.
You think that would get past an IRB? I ask.
He does think it would get past an IRB.
I am dubious about this. There would have to be very compelling reason or research for an IRB to allow an invasive technique like that.
Well, yes, he says. He can't just pull an idea out of nowhere, just completely out of his butt, and get that past an IRB.
I laugh. "Like Zamboni?"I ask, since he has already said as much.
He laughs too and makes some small protests.
However the research is moving away from supporting CCSVI, did I know that? Zamboni himself has even given up on treating.
I mention that, no, Zamboni is doing a trial. 'Brave Dreams.'
I have him on that one. We move on.
Last edited by Cece
on Wed Apr 27, 2011 5:53 pm, edited 1 time in total.