It's been a long time since I've been on this forum, for those who don't know me I'm Melissa's other half. Melissa is a 34yr old woman diagnosed with MS back in 2007 (seems a lot longer than that!) had HiCy treatment in 2008 at Hopkins, relapsed in 2009 and had three stents placed by Dr.Dake at Stanford in July 2009 as she was in the middle of a relapse.
The relapse disappeared after a few days.
You can click my user info for the whole story of course, this is just a quick update for those who know us and anyone else who may be interested.
Mel has continued to do very well, in fact I only thought about MS and CCSVI today as I saw an article on a tech website I frequent (singularity hub) talking about the Buffalo results which look promising.
We have been lucky enough to put MS behind us for now. Melissa continues to do very well and has no residual MS effects.
Even her eyesight has improved a couple of prescriptions and the pars planitis has stopped and even shows signs of 'clean up' with the snow banks reducing a lot.
Full time at work and is giving a massive presentation tomorrow in front of hundreds of doctors and phd's, she's a geneticist. Unthinkable only a year ago when keeping awake more than 4 hrs at a time was a small victory.
So for Mel this has been a complete success and the best thing is, if something does go wrong and 'it' comes back, we know what to do - there will be a blood flow issue and it can be repaired. That is the biggest comfort of all and allows us to move on (me more than her of course), not like after HiCy when we thought if this doesn't work then that's the end.
I wish you all the same results that Melissa has been lucky enough to achieve.
My mailbox is full on here but I can but I can be reached at firstname.lastname@example.org if any of my old pals want to catch up.
But, for all those who are "newbies" on the sight -- I just wanted to let you know that Mel was one of the Stanford stenters -- a pioneer in CCSVI. She had previously undergone HyC treatment and then a short year later went to Stanford. It is the best news to hear that she is doing so well. I encourage you to all take a look at Jamie's and Mel's thread which is a story of their journey with MS and CCSVI. And, now to know that you both have gone on with life -- MS is in the rear view mirror --- incredible!!
You are the best,
P.S. Snowing here tonight - possible 16" - skiing should be great for a few days -- Denver is just a short drive from Texas
Thanks for the update. I wish you the best!
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
I am 5 months out from my procedure at Stanford and I am also living a full life again. Those of us who are patients of Dr. Dake are incredibly blessed.
Thanks for posting this update. Please let us know how you are in the future. I would love to hear about the one year scans!
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Miss you guys 'round here, but really glad to hear Mel is doing so well. We've been so busy, haven't booked Jeff's one year check up yet...can't believe this year has flown by. Don't be a stranger, Jamie-
dx dual jugular vein stenosis (CCSVI) 4/09
I'm afraid that a bunch of us newbies have chased away the old guard, but please stay in touch. We all have a debt of gratitude to the early adopters, AND WE CARE!