I think the more important issue is we haven't confirmed whether this procedure will be done in western Canada anytime in the near future. We have found a location (fee-based) in Vancouver for the testing -- it's the treatment piece we still need.
In my opinion, I have read lots of accounts on here where people have made repeated visits and frequent contact with Dr. Dake, so I think proximity and access to whoever does the treatment seems to be paramount.
Your first paragraph somewhat plays into my ideas surrounding costs and medical tourism. The $2Gs for testing at False Creek will not be covered (perhaps retroactively, with some hard lobbying). There will be a tax deduction, but that has a limit, and I can't really work much anyhow, and don't make tons of money. Hopefully that will change.
I don't particularly feel the need to get scanned before seeing Dr. Simka, as Zamboni has found stenosis in essentially 100% of those with CDMS. I have been CDMS for 16 years, and frankly, I can't wait for the ethics committees, etc., to get around to it. Along with my own observations, I am 100% with the stenosis idea. I think that I even know where they are.
Further, my GP (since fired) would not even do a requisition for scanning. I am working on alternatives through connections.
To the second paragraph - this is a big concern for me as well. What if something goes sideways? I guess medical complications insurance can help, but who will we turn to in Vancouver, or Victoria if a stent causes a problem? Who will monitor our blood viscosity if we need to be on heparins?
I think that we need to get away from the MS thing, and approach it as a venous thing. I am going to a drop-in clinic this week and and going to complain about the possible thrombosis in my leg, and ask for a referral to a vascular specialist. Once I get there, I will ask about my jugs. If I get nowhere with that, I'm off to Poland, or whatever. I would much prefer to stay close to home to have it done though. Stanford is "close", but I don't have $80Gs
As to the wait lists, I only commented on that from what I have heard in Canadian media, and from people I know. I know as well as you must that our health system has been gutted, and is just limping along. It may well be possible to get neuro-surgery fairly expeditiously, but the more common the procedure (and less life-threatening) - knees, hips, etc., the longer the wait. I personally know a few people that need hips and knees, and they are waiting. That is where the medical tourism comes in.
My name is not really Johnson. MSed up since 1993