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

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

Postby MaggieMae » Fri Nov 06, 2009 12:59 pm

Bump - For newbies
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Postby Ruthless67 » Wed Nov 11, 2009 9:19 pm

I wanted to thank you also, MaggieMae, for keeping the list updated. I am fairly new here and it helps me sort of keep the people straight in my mind. Who had their surgery when, their screen name vs real, how they are post op....etc. Before I found this list I was writing my self crib notes to try and keep it all making sense. I really enjoy reading everyones updates and I like to be able to connect the dots, so to speak.
So thanks again,
Lora
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Postby MaggieMae » Thu Nov 12, 2009 6:07 am

Lora,

Thanks. That is so nice of you.

Compared to the wonderful super-intelligent people on this forum, I'm glad that I can contribute something. I was going crazy too with notes trying to keep everyone straight. I just wish that others who have had the procedure and who have not posted in awhile would let us know how they are doing. I keep wondering - are they doing better, the same, or worse? Are they happy that they had the procedure?
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Postby LR1234 » Thu Nov 12, 2009 6:08 am

I agree Maggie, We are all so keen to hear how they are all doing reguarly to know whether it is working for them or not.
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Postby MaggieMae » Thu Nov 19, 2009 8:12 am

I haven't added anyone to this list for over a week. No one new (that we know of) going to Stanford? Anyone hear from Coach?
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Postby mrhodes40 » Thu Nov 19, 2009 8:36 am

Thanks Maggie Mae!

All right you folks that didn't do your tracking post on the sticky....c'mon! your turn to knock it out of the park!
:arrow:
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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Postby radeck » Thu Nov 19, 2009 8:47 am

I had pm exchanges with some of those who haven't posted yet. I had worried that they're not posting because they're thinking the state of their health could change, and wanted to encourage them to post nevertheless since the tracking is not meant to be a final, definite state of things but just the contrary, something that's very much in flux as people document their weekly changes!

To my great surprise, the two main reasons for not posting were 1) lack of time and 2) lack of confidence that they can reliably fill in the quantitative measures like EDSS, and make medically qualified statements at the other entries.

This surprises me because it should literally take 5 minutes or less to copy and paste the template into the body of a message and fill in bits of info. Wherever a poster feels the info is incomplete, he/she could simply add "Incomplete, will update at a later time". Also, thanks to SammyJo we have a very convenient and fast way to assess the MSIS.

So, I think there's a basic misunderstanding here in that the tracking thread should be seen as a conversation, where you're not obliged to make deeply qualified statements each time but just what you can contribute here and now.

These psychological barriers seem to be widespread though, since we're still missing the MAJORITY of Stanford people and have only ONE of Zamboni's more than hundred patients!
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Postby radeck » Thu Nov 19, 2009 8:52 am

Btw, some of those who DID post have updated their entries in the last couple of weeks. It's interesting to go over that and hear how people have been doing, isn't it?

Thanks Erika, Mark, Tracy, and Marie for keeping us posted!
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Postby MaggieMae » Mon Nov 23, 2009 7:41 am

I'm bumping this up so that new visitors to this site can see the list of those (who posted on this forum) who have had the testing/procedure at Stanford. You can check out their profile or go to the tracking sticky. The list is on the first page of this posting.
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Postby CureIous » Tue Nov 24, 2009 12:30 pm

Bump for the newbies..
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 zap » Tue Nov 24, 2009 12:38 pm

Wait, who is:

Zap 1/12/10

I'm Dec 7/8 ... must have mistyped the name of whoever is 1/12
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Postby MaggieMae » Tue Nov 24, 2009 12:58 pm

Zap,

I had you down for both dates - Dec 7th and January 12th. Hmmm.... I will have to find out whose name I'm missing. TY for pointing that out.
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Postby shoshin » Tue Nov 24, 2009 4:31 pm

De-lurking to say that I am going to Stanford for testing on 12/3 and possible stents on 12/4.

I also wanted to say a big thank you to everyone on this forum, and especially Cheer, for all the effort you've put into researching this, sharing information, generating interest, and promoting further research.

sho
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Postby CureIous » Tue Nov 24, 2009 4:41 pm

Edited to shorten thread.
Last edited by CureIous on Wed Dec 02, 2009 12:01 pm, edited 1 time in total.
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 Sharon » Tue Nov 24, 2009 5:16 pm

Radeck -

Okay, I am back from my out of town trip, tomorrow I will be starting my Thanksgiving dinner for 22 people; my daughter's tracking will be done this weekend. BTW folks, I was one who received a courtesy PM from Radeck. :wink:

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