Re: Cure Or Bust's post: I'm surprised to hear that doppler is the first test to have. There seems to be a certain amount of confusion and no real clear approach to the testing we should get.
It would be extremely valuable if we can get discussion and agreement going here as to the procedures and protocols that should be followed to get reliable testing and readings. It feels to me that we are all over the place on this.
If I am going to pay upward of $3,000+ just to get an MRV where I live, then the procedures should be uniform so that I know I am asking for the best I can expect to get. It doesn't further our cause to be tossing money in a scattershot fashion.
We have a good solid cause in all the CCSVI research. This is a tremendous grass roots effort that is continuing to generate interest worldwide. We all want to participate. We all want to take action now. I think our action needs to be focused to better serve CCSVI's future.
Can we establish that doppler with Zamboni's or Simka's protocol is the first proper step or is MRV the first step. If I remember correctly, Dake switched from doppler to MRV because he could not use Zamboni's protocol without the same type of machine.
As per Simone's post, having a list of willing IRs and their locations would be another step to furthering accurate and comparable results. We need docs that are willing to learn the protocols and participate in the findings. Otherwise, it seems to me, we could end up with potentially lots of false negatives, unverifiable results and wasted money.
1. Doppler as first step: What kind of machine is needed? Whose protocol?
2. MRV as first step: Any protocol that should be followed?
3. Do we need both doppler & MRV?
4. Is venography third step? Should venography be performed by the surgeon just prior to angio or stents?
5. List of willing IR's and locations
6. How can our data make a valuable contribution to further CCSVI?
This makes sense to me. What about you.