I have been stirring up things in Rochester, New York for the SAME PROBLEM AS YOU!
The doppler of just the neck, (after giving them Zamboni's protocols) showed questionable "artifacts" in both IJV with a recommendation of MRV to confirm. Sounds good, right? So I send the IR the protocol for MRV with contrast dye.
I got an MRI, and later they tell me they need the contrast dye (HELLO - can you read?) and schedule it for ten days later. But the director says he doesn't know what my "PCP wants". I told him my PCP only knows what I am asking him to prescribe. It's on the protocols.
Then he suggested I check out Albany or Buffalo because they would be more familiar with CCSVI. So then I get Dr. Sclafani's article from Endovascular Today and check with radiology departments in two other local hospitals and a private location as well.
No luck... My problem I figured was the fact that they don't work on veins - only angioplasty (arteries). And how do you fix inverted valves anyway? Sinking into depression with a valium type prescribed drug - I wish I never knew about CCSVI. Then after two days of sadness, I was told that drug is a CNS depressant for RLS for me. I went off it and my mind opened up to new possibilities.
I then called Albany on July 23rd - and August 4th they scheduled me for an MRV October 14th, 2010
followed by a consultation. If they think they can do something, they will schedule catheter venoplasty 2 to 4 weeks later with balloons or stents if needed.
Oh one more thing ... I asked if they wanted my blood work that they did before they were supposed to use contrast dye
, and Albany said they don't need it because it's very little they will be using. hmmmm ??? Fine with me - and they didn't want my doppler either! But I'm going to bring it anyway - along with the MRI of my brain in 2009.
Dr. Meridith Englander works with Dr. Siskin, so watching these posts and seeing his name... I'm thinking I've got a good one!
Don't give up - make yourself very visable
- someone will tell you where to go!