This note is for patients who believe they have no more "wait and see" time left. If you have time and health to wait for more research to confirm CCSVI, this note is not for you.
Running out of "Wait"
This is what I did for my husband, and this is my best advice. Not everyone can get on a plane to fly to Poland. Most will need to find local help. You can do it.
Get a "team" together. This can be healthy spouses, siblings, children, friends. Assign them your case. You will work together to find a doctor to treat you.
Print out Dr, Zamboni's research papers.
Get together Dr. Mark Haacke's protocol for MRV testing-
Look for local "interventional radiologists". Search for these doctors on the internet. They often practice in groups or at universities. If you cannot find any of these doctors in your area, search for vascular surgeons. IR docs use magnetic resonance venography and venography to find venous abnormalities. They do it every day. Vascular surgeons understand the importance of venous return.
Call these doctors, email these doctors, tell them you would like to be tested for internal jugular vein and azygos vein stenosis, and send them the Zamboni research. Tell them you have headache and swelling as sign of blocked veins. Mention that interventional radiologist Dr. Michael Dake at Stanford University is conducting a clinical trial on this, and he believes that Dr. Zamboni is right.
Do not stop. We have a group of patients on the east coast of the US that spent months contacting hundreds of interventional radiologists. They found one willing to look at this, and now there are finally more coming on board. Once these doctors see the glaring evidence of venous malformation in MS patients, they are convinced it is real. Then they talk with their IR doc colleagues, and the word spreads.
When I went to Stanford last year, no one was talking about CCSVI. But slowly, the interventional radiology doctors are learning about this condition. Go to them with your team. Convince them to test you, to be a part of medical history. (You may have to offer to pay for your initial testing...but insurance will cover it once stenosis is proven. This is what we did.) Do it today.