I know not every possible person is here or the CCSVI facebook page. But we do cast a wide net. How else does one get ahold of the doctor's names to get the procedure in the first place? I hate to think of this happening to any of us. Hopefully if anyone knows more they will post. Otherwise with the source being from a neuro, well, they haven't been the best of sources...so I will hope for the best there.
Dr. Sclafani has said he is not too concerned about vein rupture because these are low-flow systems (which must mean it won't do as much damage or can more easily be stopped if it did rupture?) For trauma care they can stop a bleed by inflating a balloon to block the flow...and handily there is a balloon in the system when the procedure is being done...although I'm not sure what the next step is. I am not sure how a stroke would follow, those are more a result of artery blockages not veins, aren't they? Also the higher up that this would occur, such as with a high-up jugular stenosis, the more of a concern it is. A bleed lower down, like where the jugular meets the subclavian, is a nice distance away from the brain itself.
I feel like I should start adding caveats to some of my posts: I don't really know much about all this.
The azygous clotting over and the patient worsening is a realistic and concerning possibility. We've seen so many people do well that it would seem to be a rarer complication, if it is one, but if mobility is at stake and you're the one who gets hit by the rare complication....
I think with us going for this procedure while the knowledge about it is still unfolding, we are taking an unknown degree of risk on. I am glad for all the post-procedure reports that are shared here, I think we may get a clearer picture of the benefits and risks before the researchers ever do.