CCSVI patients' log

[ErikaSlovakia]

For those who did not like the new spider avatar. He is a new one!

Cat

Hi Cat/Spider!
I have to lough so much about your idea with the avatar!
Erika

[catfreak]

Hi Erika!

I was just trying to relate my avatar with my experience with the "Arachnoid Tissue Cyst".

If I could have found a spidercat I would have used that.

Good luck with all your endeavors. I am thinking about you a lot!

Cat

[zap]

or

[catfreak]

Zap,

I love the first one if NHE will let me keep it, but that 2nd one is just wrong!!!!!

Cat

[wobbly]

i m still following / this really is 4 real/ i m ready 2 get roto ed out again / seems like there is varying opinios whether 2 stent or just get a clean out/ i bet italy is gorgeous / it was in january/ CHEER way 2 go/ i found dr z 2 be very very caring / he is the leader of a great pack/ these people r truly sincere / the folks from here r very dedicated and a joy 2 be around/ STAY STRONG ALL

[mrhodes40]

Bless you wobbly, glad to see you!!!!

You do get a second treatment? they agreed? can you talk now like Gici can or not yet for your group?

[wobbly]

if i should talk or not seems like the cat is out of the bag/ who is ceci/ i no nothing abt a 2nd treatment/ marie u STAY STRONG

[MaggieMae]

Could we have a current update from all who went (or are going) to Stanford? Jamie, Loobie, Cheer seem to keep us informed. But, I'm wondering about the rest that we haven't heard from in awhile. Are they seeing any differences? I can't keep track of everyone.

The names I can remember:
Mel (Jamie)
Lew (Loobie)
Jeff (Cheerleader or Jeff w MS)
Marie (MRhodes40)
Alex Gibbs (Gibbledygook)
Sharon (Sharon)
Holly (Peekaboo)
Mark (Skydog)
Randi (Arcee)
Daisyduck
Sharon (LadyStewart)
Mark (CureIous)
James (Skydog's friend)
Mary (Sharon's friend)
Cindi (Catfreak)
Steve (Mormiles)
Sharon's daughter (Sharon)
Co-worker's wife (Mel/Jamie)
Coach
Kate (Katelayne)
Blake (Greenwave)
Tracy (Questor)
Sport
Rokkit (10/6/09)
Heather (akaheather) 10/8/09
Erin (Loobie's friend) 10/8/09
Rose (Rose2) 10/19/09
Rhonda (Magoo) 10/16/09
Samish 11/09
Zap - 12/07/09
Prof8 - 12/09
Chris (chrishasms) 1/10

Please correct me if I'm wrong on any of these and I will edit.

I'm bumping this up because this list has been updated numerous times, but is getting lost in all the postings.

Just to let you all know I keep updating when I hear someone new is having procedure.

[Arcee]

Hi All -

I had my follow-up appointment in Boston today and am thinking I should post here rather than in my original thread.

The brief back story: stentee #15 on July 15th when I moved from digital cable to HD, continued positive post-surgery experiences, and Dr. Dake arranged for a doctor he respects here to oversee the MRV and MRI and share the results with me.

Good news! All appears to be fine with my stent. Dr. Dake is going to do a double check on the pics and reports, but it's looking like I am off the Coumadin. (insert emoticon for extreme relief) I will be going back to Stanford for my first anniversary follow up next July.

I have some other comments to make about CCSVI in Boston, but I am going to start a separate thread as I know we are trying to preserve the integrity of the log.

- Randi

[prof8]

I haven't gone yet. Have my appointment in December.

[MaggieMae]

Bump. I added Sport

[zap]

I'm actually meeting Dake on the 7th, possible surgery on the 8th - noticed you have me down for the 9th.

[MaggieMae]

Bump - I added Magoo and Rose 2

[MaggieMae]

Bump - Just added Samish to the list of people treated or going to be treated at Stanford (that I know of). Wish there was somewhere to post this list so that it could be updated easily and kept where all could see.

[LR1234]

Maggie there is the new tracking for CCSVI patients (with no comments other than the patients experiences) Maybe via this thread we can encourage those on the list to write on the tracking thread.