List of Those Who Had/Scheduled to Have Procedure-Stanford

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

List of Those Who Had/Scheduled to Have Procedure-Stanford

Postby MaggieMae » Wed Oct 07, 2009 8:39 am

This is a list of those who had or are going to have procedure at Stanford. This list was part of another topic and it was suggested that I move it under its own topic. Also noted those who have posted to the Tracking Sticky.

The names I can remember:

Jeff (Cheerleader or Jeff w MS) 5/12/09 -posted to Tracking sticky
Marie (MRhodes40) 5/19/09 -posted to Tracking sticky
Sharon (Sharon) 6/2/09 -posted to Tracking sticky
Daisyduck 6/17/09
Alex Gibbs (Gibbledygook) 6/23/09 -posted to Tracking sticky
Mark (Skydog) 6/30/09 & 11/12/09 -posted to Tracking sticky
Holly (Peekaboo) 7/2/09
D. (Cheerleader's friend) 7/09
Islandgirl 7/7/09 testing - no procedure
Mel (Jamie) 7/7/09 -posted to Tracking sticky
Lew (Loobie) 7/14/09 -posted to Tracking sticky
Randi (Arcee) 7/15/09 -posted to Tracking sticky
Mark (CureIous) 8/3/09
Sharon (LadyStewart) 8/4/09
James (Skydog's friend) 8/14/09
Mary (Sharon's friend) 8/26/09
Co-worker's wife (Mel/Jamie) 8/27/09
Cindi (Catfreak) 9/2/09
Kate (Katelayne) 9/3/09
Sharon's daughter (Sharon) 9/4/09
Blake (Greenwave) 9/9/09
Tracy (Questor) 9/16/09 -posted to Tracking sticky
Sport 9/24/09 -posted to Tracking sticky
Steve (Mormiles) 9/29/09
Rokkit 10/6/09
Heather (akaheather) 10/8/09
Erin (Loobie's friend) 10/14/09
Rhonda (Magoo) 10/16/09 -posted to Tracking sticky
Rose (Rose2) 10/19/09 -posted to Tracking sticky
Sammy Jo 10/29/09
Beth (CRHInv) 11/9/09 -posted to Tracking sticky
Coach 9/21/09 testing - no procedure - rescheduled 11/11/09
Oliver (Radeck) 10/19/09 & 11/23/09 -posted to Tracking sticky
Samish 11/23/09
Shoshin 12/3/09 -posted on Tracking sticky
Zap - 12/7/09 testing - no procedure
Lisa (CNClear) 12/8/09 testing-no procedure -posted to Tracking sticky
Prof8 - 12/09 testing - no procedure
Katie41 12/16/09 testing - no procedure
Kenton (Creedmore) 12/17/09
Chris (chrishasms) 1/10


12/17/09 TOTALS: 41 TOTAL - 34 PROCEDURE - 5 TESTED/NO PROCEDURE - 2 SCHEDULED

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

Note: There are others who have had testing and procedure, but they have not posted on this forum, nor has anyone posted for them (so I don't know who they are).
Last edited by MaggieMae on Fri Jan 08, 2010 9:42 am, edited 45 times in total.
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Postby CureIous » Wed Oct 07, 2009 8:49 am

So impressive that you've kept all that straight. I'm always in awe of the administrative mind that can do that. Did you intend to "date" everyone on the list or just the most recent? Not sure it matters but thought I'd mention it. Thanks!
Mark (8/03/09)
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby MaggieMae » Wed Oct 07, 2009 8:57 am

At first I wasn't dating. Then, as I started to add the names of those who had scheduled (not had procedure), I started dating. Maybe I should go back and add dates to all.
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Postby catfreak » Wed Oct 07, 2009 9:05 am

Catfreak - Cindi 9/2/09
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 Sharon » Wed Oct 07, 2009 9:20 am

Sharon - 6/2/2009
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Postby Loobie » Wed Oct 07, 2009 9:24 am

Lew - 7/14/09
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Postby skydog » Wed Oct 07, 2009 9:29 am

Mark, 6/30/09
Plant a BIG Garden Live in the Moment
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Postby CureIous » Wed Oct 07, 2009 9:29 am

MaggieMae wrote:At first I wasn't dating. Then, as I started to add the names of those who had scheduled (not had procedure), I started dating. Maybe I should go back and add dates to all.


Can't hurt! It is very interesting to see the progression of everyone in here. You are a scholar and a patriot! We thank you! :) Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Arcee » Wed Oct 07, 2009 10:18 am

Randi (7/15/09)

And, not to create more work for you because this already is so great, but want to add numbers so we have a tally? It will be so interesting to know how many people we know have gone.

Thanks!
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 radeck » Wed Oct 07, 2009 10:53 am

You may want to point people to the new tracking thread at

http://www.thisisms.com/ftopict-8346.html

Looks like we have many more to contribute and arrive at some interesting statistics!
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Postby Sharon » Wed Oct 07, 2009 11:28 am

Sharon's daughter 9/4/2009
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Postby MaggieMae » Thu Oct 08, 2009 5:03 am

Bump - I added dates
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Postby LR1234 » Thu Oct 08, 2009 5:15 am

Nice work Maggie! Its great to have this list!
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Postby MaggieMae » Fri Oct 16, 2009 11:45 am

Just added Radeck and CRHInv to the list.

We are still waiting for our appointment. I started this procedure back in June with our neurologist. After a failed MRV (radiology did an MRA instead) in July and contacting Alex in August, we finally talked to Dr. Dake the end of September. I have e-mailed Alex a few times and have not heard back. This is getting frustrating. I think because of my husband's age (60) and he has been had MS for 35 years, they just aren't interested in him as a candidate.
Last edited by MaggieMae on Thu Oct 22, 2009 5:11 am, edited 1 time in total.
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Postby Sharon » Fri Oct 16, 2009 12:11 pm

Oh, MaggieMae
I think because of my husband's age (60) and he has been sick for 35 years, they just arent' interested in him as a candidate.

I am 66 and Dake treated me.
Be patient - I think they are just overwhelmed. We forget that Dake does other things in addition to working with the MS patients. He is a busy person.
Thanks for keeping the list updated.

Sharon
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