CCSVI just needs to be studied and tracked and we can all bloviate all we want until results are published. I agree with a lot of the stuff on here. I was one of the first on this board to have it done with a case of semi-advanced MS (not the first by any means, Marie et al take that prize). I most definitely saw improvements during the first six months. I really don't see anymore active improvements but some of the improvements are still with me as evidenced by the fact that I don't need my cane anymore.
However, despite having wide open jugulars, I have still gotten weaker in my legs despite an exercise regimen that is part my own and part supervised by my MS physical therapist.
I mean if the improvements would have continued, there's no way I'd have retired; butd I did. But it does feel different now. Progression doesn't seem to be as fast as it was that's for sure. I am almost of the mindset that the CCSVI procedure most definitely did beneficial things to my own disease in terms of how it was progressing and all of that. So it's almost like we eliminated the CCSVI issue, it helped certain things that the CCSVI was obviously aggravating, but now I still do have MS and MS progression. It's just not in the areas that were aggravated by clogged jugular veins. It's obvious to me that maybe it really helped my balance out, but did nothing for what is making my legs get weaker and have less endurance. It helped with the severity of my dizziness, but didn't eliminate it completely.
Bottom line is I'm glad to have done it to be in the camp of leaving no stone unturned; and it did give me benefits I feel I wouldn't have had had I not done it. I just don't think we really know what's under that particular stone with any kind of definity.
Just like the CRABs, this procedure really helps people new to the disease. Can I get an extremely large DUH here? Bottom line is, scientifically, we still don't know shit about what it really does. We still can't draw a definitive correlation between fixing it and what it really does medically. We only know people feel better and when living every single GD day with MS, that's enough to get on a plane, spend a bunch of money and get passionate about it. I did it and would do it again.
I think we all need to realize one thing. We'd all do ANYTHING to get rid of our MS. This isn't just 'anything' like "hey I heard eating asphalt will help MS patients" since there are some obviously respected physicians talking about it. But it's all still conjecture, just like the autoimmune model, until someone can show a causal relationship between fixing it and measurable disease progression. I don't want to talk about lesions. I have very, very few yet I'm an EDSS 5. I know other people with literally hundreds who ae a 2 or less, it's progression that matters to the patient, not lesions.