I have been thinking about this too. Cheer, I think you are right on, but the frustration is that the treatment is generally not locally available. I am local to Stanford, and no treatment is available there anymore. I am not even sure if I can get diagnosis.
I am looking into the cost and what arrangements are necessary to go to Buffalo, where they know how to properly do the diagnosis, but it is going to have to be at my own expense. How much better if it could be locally available!!
I think our efforts, time and money can probably be most effectively spent on getting the diagnosis and treatment widely available and maybe even covered by insurance. I have some ideas on that topic, and plan to start a thread in the near future. In the meantime we need to keep the pressure on to get this diagnosis and treatment locally available.
Hey fogdweller, I am close to Stanford too and am feeling hugely disappointed having learned about the procedure when it was too late for me to take a chance at Stanford.
I am thinking about printing out the testing protocols (I found them being referred to here and on other sites) and going to the nearby vascular specialists asking if they can do the imaging as per those protocols.
Then when I know if and where I have malformation I would be looking for someone to fix it. Again, as per the CCSVI procedure protocols (I have not searched for those yet)