Have we been thrown dust into our eyes?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby AJMcE » Sun Dec 26, 2010 7:58 am

EJC has made the point that CCSVI has to be worth a shot, I totally agree. At the moment there isn't anything else that gives symptom relief, for any time period at all.

I had balloon angioplasty in Warsaw on the 17th Dec, I wasn't entirely certain that it was the right thing to do, but things were slowly getting worse, and I didn't want to just wait, and permanently end up in a wheelchair, so I went ahead and had it done.

I had a small (50%) restriction in the flow in my LIJV, the valve wasn't opening properly, this was ballooned.

After the procedure I have;
Better balance
Better coordination
Less cog fog
Less fatigue
The ability to put trainers on without sitting down
Clearer vision
Stronger leg muscles.

I know that these improvements may well not last, but at least they have happened once, and the procedure can be repeated in the future.

Concerned said that there is no evidence for CCSVI helping in MS. I don't care about "evidence" I just want the chance for improvements, even if they are transitory.


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    Postby EJC » Sun Dec 26, 2010 8:38 am

    I'd suggest you have your own evidence and don't require a lengthy and costly scientific paper telling you that it's helped.

    And fundamentally that's my point, if it helps relive symptoms as it seems to do. Then grab the opportunity with both hands until a better understanding or more permanent solution is uncovrered.

    I see very little downside indeed.
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    Postby Loobie » Sun Dec 26, 2010 9:11 am

    Oh, I'm of the same ilk in that I feel the procedure helped me immensely. It's just that it only peeled back so far and stopped and now I still have either some progression happening or just aging from this damaged spot.

    However, over time when things stop improving (they're still better than they were) you start to feel MS'y again and it sucks. It's as simple as that. The shine wore off, I still have a screwed up bladder, bowels, vertigo, yada yada yada, and I definitely don't need any consensus from the scientific community to know it's real.

    But I have to know WHY it worked and if there's any hope for further improvements. Since my funtion graph is not on an uphill slope or flat, there is still stuff going on. I would just like to see MS be studied. Not just the neuro side or not just the vascular side. How do they fit together are interact? Sadly those are questions that are uber divided way of discourse make very hard to even go about looking at.
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