CCSVI patients' log

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby ErikaSlovakia » Tue Sep 08, 2009 10:43 pm

catfreak wrote: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! :D :D :D
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- 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
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Postby catfreak » Wed Sep 09, 2009 6:58 am

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
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby zap » Wed Sep 09, 2009 7:18 am

Image

or

Image
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Postby catfreak » Wed Sep 09, 2009 7:46 am

Zap,

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

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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wow

Postby wobbly » Wed Sep 09, 2009 10:24 am

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 8) 8) :)
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Postby mrhodes40 » Wed Sep 09, 2009 12:16 pm

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

You do get a second treatment? they agreed? can you talk now like Gici can or not yet for your group?
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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i dont no

Postby wobbly » Thu Sep 10, 2009 12:52 pm

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 :lol: :lol:
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Postby MaggieMae » Wed Sep 16, 2009 8:43 am

MaggieMae wrote:
MaggieMae wrote: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.
Last edited by MaggieMae on Wed Oct 07, 2009 5:35 am, edited 11 times in total.
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Postby Arcee » Thu Sep 17, 2009 3:26 pm

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
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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Postby prof8 » Thu Sep 17, 2009 9:08 pm

I haven't gone yet. Have my appointment in December.
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Postby MaggieMae » Mon Sep 28, 2009 10:55 am

Bump. I added Sport
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Postby zap » Mon Sep 28, 2009 11:00 am

I'm actually meeting Dake on the 7th, possible surgery on the 8th - noticed you have me down for the 9th.
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Postby MaggieMae » Thu Oct 01, 2009 5:31 am

Bump - I added Magoo and Rose 2
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Postby MaggieMae » Wed Oct 07, 2009 5:37 am

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.
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Postby LR1234 » Wed Oct 07, 2009 5:42 am

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.
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