I feel terrible for Barb. I also have a child and fear that due to my aggressive decline I may be in her position someday. However, it seems strange to say that her decline after the procedure was due to immunomodulators. Maybe CCSVI just doesn't work.She felt better due to the power of the placebo effect, If we could make it last it would be wonderful.
I pop in here for updates looking for news to support this theory and make me believe it could help me, but I just don't see it. I kept an open mind for a long time, but thre benefits , if any, don't seem to last.People make excuses -"it was the immunomodulators/re-stenosis, they didn't use Dr. XY or Zs protocol,etc". I don't think this is helpful to any of us.
I welcome the trials here in Canada to put this issue to rest once and for all. I wantt to know the truth, not continue to make excuses for why it does not seem to have lasting measurable benefits. Or maybe it does? It just doesn't seem like it fro, what I read here.
Kathy, 49 with PPMS,full time scooter.
Married to a wonderful man, mother to a darling 9 yr old boy