Loobie wrote:Yeah man,
We just need to know that it appears a completely logical correlation going on here.
RRMS short time - inflammatory based disfunction - turn off the inflammation cause - things get better.
SPMS - not inflammatory but degenerative = damage. Damage takes more time to repair than shutting off the source of inflammation, so things will still flare up when you are overworked since they are damaged. So it stands to reason that only cerebral based things like dizziness and that will be affected short term.
But now me being 5 months out from initial procedure I can definitely say that at rest, I'm 1000 times more comfortable. I can put myself right back in the throes of feeling as lousy as I ever had, but I was starting to feel like that just sitting there. Now when I get up from a seated position and just walk down a corridor at work, my legs feel almost normal. Things are happening slowly, just like our progression did. I hope to God it continues to go in that direction. I had buyer's remorse immediately because I didn't get any immediate results. Now that I've gone 5 months (7 w/out immune modifying drugs), I have nothing but hope for the future. It's still very guarded, but it's there, and I think I speak for a lot of us, I'm almost useless without hope.
I'm not done yet though. I have a 12/16 appt. with Haacke to look at the SWI images and even think I'll try to get an "educated" doppler look as I still am baffled at the disconnect between Z's and D's azygous findings. It seems to me that the membranous obstructions in a vacuum of stenosis would be impossible to pick up with imaging only. That's my $0.02 worth anyway. I'm going to keep plugging away at this since I feel better when I have a plan of action. Just sitting and waiting for something to happen feels eerily familiar to when I was on the CRAB's and under "Dr's care".
Thanks so much for posting and keeping us updated.
I have a question. Why didn't Dake do another venography? I know the MRI suggests things look fine, but Zamboni doesn't think this imaging is good enough to detect abnormalities. Do you think there could be more going on?
Be well and I hope healing continues.
Rokkit wrote:Tracy thanks for the honest update. I am also wondering about the possibility that you (we) were under-treated the first time around. It's always bothered me that Dr. Dake found very few azygous issues. There's also the new issue of going in from the left to rule out MT, etc. The only alternative to under-treatment seems to me that something's going on in addition to CCSVI, which of course we hope is not the case.
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