Jeff's off coumadin! Whoo hoo! He noticed an immediate uptick in energy the past couple of days he's been off it. He was on 10mg. and felt tired by the end of the day since the increase of dosage...not the MS fatigue of the past, but just ready for bed. Now off coumadin, he's feeling even better.
Three and a half months out he's noticed improvement in fatigue, cog fog, heat intolerance, less urgent bladder, better voiding (he's able to sleep thru the night without getting up) less leg pain (just occasional now) less spasms, better mood, much more sweating.
I have noticed clarity of mind, much better color in his face, better balance, he's more here and present in his body. And his sense of humor is back.
Jeff has said that he feels his improvements are amazing...but he's also wary of coming on here because they are "anecdotal." We've talked alot about how "results may vary" and he is very conscious of not wanting to mislead others or give false hope. He was only diagnosed two years ago and was a 1.5 EDSS. He did have a long recovery with shoulder issues, but they are all resolved now.
Without a doubt, he is glad he did this procedure, and as scary as it was being the first...he knew it made sense. He just couldn't see leaving the closed jugular veins alone, and letting his blood continue to reflux into his brain. Dr. D did try to just balloon Jeff's jugs at first, but they closed right back down. Stenting was his only option...or leave the jugs alone and hope for the best.
He'll have a check up with Dr. D. next May, and will go in to see his neuro this fall and tell her all about the procedure and his results. He continues to take his copaxone (for anti-inflammatory benefit) and supplements (for anti-coagulation and anti-oxidant benefit), and is still on the modified Swank diet...it's the endothelial health program we came up with last year. He exercises and has been doing strength and balance training with our son. He will continue to do everything in his power to stay fit and active.
We'll continue to update here- but we both feel our efforts on TIMS have come to closure. I'll post my reports after Bologna, but I need a break from the day to day stuff. CCSVI is going to follow a natural course...it will either be accepted and become a standard procedure for MS, or will be discredited. Debating its merits here will not change that. I'm sorry for making TIMS controversial or less fun, but I came here to help my husband, and I have. I'll be over at Facebook- CCSVI in multiple sclerosis.
See y'all after Bologna!
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09