by BooBear » Wed May 26, 2010 4:21 am
Yes, you are reading correctly- I agree with Lyon and Scorpion- to a point.
I do want solid, closely scrutinized clinical trials. I feel CCSVI deserves at least what medicinal trials get all the time. I know- I am participating in a medicinal trial right now. I get blood tests every month, MRIs every six months, I keep a diary and have to track every symptom, additional medicene, etc. that goes on with me. I feel we need the same with CCSVI- structured tests, close patient monitoring and solid results.
I have not had a relapse in a year; however, my last MRI (taken three months ago) indicates two new areas of activity that were not there six months prior. RRMS does wax and wane; however, how much damage is really occurring in our brains in between relapses? Most of us are not getting MRIs done as frequently as I am right now, so it would be hard to tell.
I agree with mshusband- if I have a blood flow issue to an organ as critical as my brain, I would like it repaired, please. It can't be a good thing.
If the arguement is that we cannot credit every benefit the Liberation treatment offers- despite how astonishing some of those benefits have been for our brethren- without solid clinical evidence, fair enough; at the same time, how can we attribute every benefit that these people have had to a placebo effect without the same evidence?
I don't feel that it is right for doctors willing to perform the procedure to be shut down, nor do I feel it is right that funding is tight in what may be a life-changing event for all of us. If it has the potential to be a significant revelation in the treatment of this disease, it should be full steam ahead for all of us. We simply do not have the luxury of time- as my latest MRI showed.
Three veins angioplastied. One renewed life.