How to get started?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

How to get started?

Postby newmomma09 » Wed Mar 24, 2010 12:35 am

I have been following this forum on CCSVI for a few months now. I still haven't spoken to my neurologist and I don't know why I am being so...wimpish! I live in VA and I did call Georgetown and leave my contact info, but I never got a call back. I dont' know why I am hesitating about being my own advocate. I have RRMS, diagnosed 5/08. I was wondering if anyone knows if having heart problems precludes you from getting the procedure or being in trials? I had open heart surgery when I was a baby and I still have a murmur. My MS is pretty mild, thank God. I guess I need some advice on how to go about getting the testing done. Any ideas? Thanks!
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Postby eric593 » Wed Mar 24, 2010 12:45 am

If you've been reading here, then you know that interventional radiologists are the ones to seek out for diagnosis/treatment, not a neurologist.

Your question about whether your heart issues preclude treatment would be better directed towards one of them, I'm sure. Have you looked at the list of doctors involved in CCSVI treatment? ... nt/doctors

I'm not sure how current the list is but I would start by getting a list of interventional radiologists in your area and inquiring whether they are familiar with CCSVI diagnostics and treatment. Even if that doesn't pan out, it will help all MSer's because the more demand that is created, the more doctors will get involved and help us.

If you are in a hurry, then you can contact one of the doctors on the list who is already performing diagnostics/treatment.
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