Tuesday, April 27, 2010

What do I believe about CCSVI and Liberation?

I was asked this by a fellow TiMSer... he wanted me to respond to his questions both before and after the procedure. Here is my "before" response:
So what do I believe? Given the evidence so far, I will likely have some kind of stenosis... I am SPMS and even in the Buffalo study 80% of people with advanced MS were found to have CCSVI.

Then, assuming the stenosis is significant, I believe (and it does make sense) that there should be a reduction in fatigue since hypoxia should be reduced. Anecdotal evidence suggests that I may have an alleviation of other symptoms (perhaps my hands will not be so numb, my feet won't get so cold, I may even trip less), but it's not clear why some MSers see these short-term improvements and others don't... how much of this variation is due to the placebo effect and how much is due to the actual variability in the causes and progression of MS?

Over the long term, I hope that the progression of the MS will be slowed or even stopped, but that is more a hope than a belief since we don't have much evidence either way and won't have for years, I suspect.

As far as being nervous goes, I guess my only real worry is that I'll be that one in 5 (or 10, or 20) that doesn't have CCSVI or that, if I have it, I'll be that one in a hundred that can't be treated.


  1. Dear Ted

    My heart is with you. All the best for tomorrow. Hope you can get some sleep tomorrow.


  2. Following your experience. Thanks for the great info. I so hope your results are everything you hope for.