Any of this may be subject to suggestions specific to EDS/POTS that I don’t understand yet, maybe Dr Diana can weigh in on this overlap. always start with the least invasive approach, which might be the medications she suggests.
I am coming at this from an MS perspective, and have been treated 4 times w/ stents. I started early with the first group treated at Stanford in 2009, and now there is better understanding, so it takes fewer treatments now, depending on your tendancy to re-stenose. Also, they try to steer clear of stents now if possible.
Here is the info published by CCSVI Alliance on diagnostics
They have lots of CCSVI info, and also check for interviews w/ the experts at the Feb 2012 conference,
http://isnvd.org And more education at http://thinkccsvi.com
The non-invasive doppler is the best way to start, $500-900. Best place for this is http://ccsvi.azdoppler.com They are trained in the Zamboni protocol. They also travel to other cities too. This can see jugulars, renals, iliac, cerebral veins, but not azygos.
If you get a hit via doppler, I would just go for the venogram, because then they fix it if they find anything. The Haacke MRI is nice to have, but more expensive. Work with the provider on insurance coverage, let them contact your insurer for pre-authorization etc.
For the venogram, stick with an interventional radiologist clinic who is part of an IRB approved trial/registry, like the Hubbard ccsvi registry, they have a map http://www.hubbardfoundation.org/CCSVI_locations.html
An IRB approved trial offers better patient protection, and benefits future patients because your results are tracked and compiled into a study that will be published.
Last thing, an interventional radiologist is not trained to treat the deep cerebral veins, that is reserved for an endovascular neurosurgeon, and so far we don’t have any treating CCSVI. Keep your results if this is the case, get the veins treated you can, and we’ll have to wait on the cerebral veins for now.