Welcome to Ana and Blitzi and all the new followers of CCSVI from around the world-
I know it seems like an uphill battle, but remember...Dr. Zamboni's work was just published in December 2008! So, things are actually happening quite quickly, thanks to the internet, and Dr. Zamboni's tireless commitment to MS patients. He and his dedicated team are doing the work of 1000 doctors, and we all need to keep them in our good thoughts and prayers.
The best defense is a good offense....the best patient is an informed patient. I have listed some talking points and responses to dubious neuros here:
http://www.facebook.com/note.php?note_i ... 210&ref=mf
It is geared towards Americans, but all can read it and take the info to their doctors. Yes, it will take years and years of studies to change the standards of procedure for MS. BUT, if you have venous stenosis, you can have that diagnosed and corrected by a vascular doctor, without the need to prove it is causing your MS.
Venous occlusion correction is covered by insurance in the US, because it is known to cause harm to the organ the vein drains. This is accepted by the medical community. This is why I found Dr. Dake on my own, this is why other MS patients can talk to doctors and ask, "Can we test to see if I have stenosis in my jugular or azygos veins?" That is the first step. Anyone could see my husband had completely occluded jugulars, with tiny collateral veins and terrible reflux...he needed help!
GiCi...we 're on the same side! I'm afraid you thought I was chastising you...I wasn't. We both agree that the language we use needs to be tempered with realism, and not to give any false hope. But we also need to share this and encourage other doctors to examine this paradigm for themselves. A delicate balance, but we'll find our way!
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS