Hello everyone (new friends and old friends)...
I must say first off, that I took some time off of anything ccsvi and ms related after getting the procedure done in Bulgaria in September. I felt like a million bucks and there was NO multiple sclerosis in me at all.....I really felt 'normal' again for the first time in ten years. I have RRMS and altho I was still fully mobile and had the "you don't look like you have MS" body, it was really starting to affect me with pain and fatigue and brain fog. At the time of the procedure I felt like an old dog that wanted to go into the forest, find a patch of grass to lay on and die.
Then the procedure happened and it was amazing. My nerve pain in my legs was gone, my brain fog was gone, my spastic legs were not spastic anymore, I was sleeping great, and I really felt ten years younger rather than fifty years older. I finally had the drive and energy and zest to feel like the world was my oyster and I was the pearl that was going to dazzle the world.
And now, I know, that the veins have re-collapsed. I hate to say it. It feels like such a disappointment, not only to myself and my family, but to my MS family, my friends and everyone else that felt so happy for me that I finally felt normal again.
I forgot about everyone on this forum when I felt good. And now that I feel like crap again, here I am, ashamed and humble that I am coming back to you for support and help and advice and info. If I had a tail, it would be between my legs right now.
I guess the re-stenosis occurred slowly. I started to feel the pain in my feet, and after about four weeks it's now up to my thighs. And it gets more intense every day.
I want to go to California and have it done again. But I am just so conflicted. Is this sort of set back normal? Should I go again? What are the risks of that?
How many people on here felt great, then like crap and what have they done?
I just don't know if I can go back to where I was. I feel like my spirit is hanging by the thinnest of threads. To have three months of being normal and the last month is like going back to the crap-pile and it's devestating.
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos