I wanted to post a note, because I've received this question from many online, and I think it's important to understand what Dr. Zamboni, (the man who discovered CCSVI and has spent years developing a diagnostic and treatment protocol), has found. It is very important to understand that CCSVI can be caused by several issues. The doctors researching CCSVI are finding many defects.
Dr. Zamboni has described CCSVI as created by truncular venous malformations, mostly "intraluminal defects", meaning problems inside the walls of the jugular and azygos veins.
The types of malformations found by Dr. Zamboni in his published research have included:
Annulus refers to significant circumferential stenosis of the whole venous wall;
Septum/valve malformation refers to anomalous valve apparatuscausing significant flow obstacles at the level of the junction of the IJVs with the brachiocephalic/anonymous trunk;
Hypoplasia refers to under-developed long venous segments;
Twisting refers to severe stenosies in consequence of a twisted venous segment;
Membranous obstruction (web) refers to a membrane almost occluding a vein;
Agenesis refers to the complete anatomical absence of a venous segment.
Annulus, septum, membranous obstruction, hypoplasia and agenesis are truncular malformations previously described in other venous segments (cava, iliac, deep veins of the lower limbs).13 In Figure 7 there are some examples of venous stenosing lesions morphologically quite similar to those described in the IJVs/AZ in course of CCSVI. In contrast, twisting of the AZ is a truncular malformation never been described so far (Figure 8). In Table 1the distribution of the different truncular lesions in the extracranial and extravertebral cerebrospinal veins aregiven, and the more typical malformations are shown in the figures.
Here is the full paper:
http://phleb.rsmjournals.com/cgi/content/full/25/6/269
This research is very important to understand, because there is no one size-fits all approach to treating CCSVI. And the IRs are working hard to develop a standard protocol. That's what the convening meetings and conferences are all about.
This post goes along with Marie's note - "My doctor is EF Hutton."
It is very understandable to want to believe that your doctor knows everything about CCSVI....it's a natural response ...especially before undergoing a medical treatment, and perhaps paying for it. But we need to be honest and upfront. We are at the beginning stages. Read Dr. Zamboni's paper, and note that there are many underlying issues creating Chronic Cerebrospinal Venous Insufficiency. It's different in everyone.
Joan
