In many ways, I feel we're on the sidelines watching. I don't know that, as advocates, we have as much of a job to do these days. It feels like it's in the hands of the researchers. Research takes forever, apparently, even if it were being done in the most direct, optimal, well-funded ways. I agree about advocating for people to go ahead and learn about CCSVI and decide with the help of an IR if it's the right choice for them. Here in the US, the big task before us is to raise awareness about CCSVI, because people haven't even heard about it. The attitude of the neurologists works against us, because the neurologist have a unified message that CCSVI has been proven wrong and that it had been a crazy dangerous fad. I don't want everyone who hears about CCSVI to run right out and get it, especially considering that the doctors are not all doing the procedure the same way or to the same standards of safety and efficacy, but I want everyone who hears about CCSVI to get full and accurate information. And that's not happening, not at all.
ok, another abstract:http://registration.akm.ch/einsicht.php ... KEN_ID=900
In the British Columbia registry, they tracked actual CCSVI patients who had received the treatment out of country at various providers. 68% of patients said that the treatment met their overall expectations. If I had to guess, I'd guess that our expectations going into the procedure are high, so it is good that so many patients achieved this. Personally it was true for me as well: expectations met, and then some. Five patients out of fifty reported procedure-related complications. This included pain during or after the procedure, a rendez-vous procedure where the procedure is done through the neck vein instead of the groin vein, and a patient who was unable to have the procedure completed because the vessel was 90% blocked. It's significant that 90% of patients had no procedure-related complications and that I'm not even sure having a rendez-vous procedure counts as a "complication"; it's simply a different way to achieve the procedure. And not being able to complete the procedure because the vessel was 90% blocked, what does that even mean? The vein had a suboptimal outcome after ballooning? Or the vein was blocked and so it wasn't ballooned? I'd guess the suboptimal outcome after ballooning but am not sure.
The researchers looked again at complications at the one month mark, and again 90% of patients had no complications, and 10% (five patients) had complications, although it is unclear if these were associated with the procedure: heart attack symptoms, arrhythmia, trouble breathing, swelling in the left arm, and pain.