Waiting to hear from Alex!

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

Postby magoo » Fri Sep 18, 2009 6:03 pm

Alex just emailed!!!! She said she'd call me Monday morning!!
Is there anything I should have prepared for the call???
Thanks:)
Rhonda~
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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Postby Loobie » Fri Sep 18, 2009 7:21 pm

magoo wrote:I know what I want to ask...
Do you stop your MS Therapies prior to CCSVI?
Thanks.


I stopped mine, so far so good, but only 13 weeks without it so far, so the book is still out. I figured if I'm doing this, I'm all in, but that is a HIGHLY personal decision. I progressed on everything, save Copaxone, and I'm after the progression is over thing.
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Postby catfreak » Fri Sep 18, 2009 7:23 pm

Will this be the 1st time you have talked to her? Or have you already talked to Dr Dake and she is calling to make appointment? Have you sent MRI's and/or a Medical History to them yet?

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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 Loobie » Fri Sep 18, 2009 7:23 pm

magoo wrote:Alex just emailed!!!! She said she'd call me Monday morning!!
Is there anything I should have prepared for the call???
Thanks:)


Just your insurance info. if I remember correctly.
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Postby CureIous » Fri Sep 18, 2009 10:08 pm

:)
Last edited by CureIous on Sat Oct 03, 2009 3:43 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 CRHInv » Sat Sep 19, 2009 8:45 am

You could always ask her to call me too!
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Postby magoo » Sat Sep 19, 2009 3:27 pm

This will be my first contact. I'll make the most of the time I have, you can count on that.
After I posted my symptoms last night and shut down my laptop, I realized I forgot to list cognitive problems. Then I realized how funny that was!!! Of course I forgot, lol!
Well today was a reminder for me of how important this is. I sat through my son's football and soccer games in humidity, fighting every symptom so that I could be present for them. I need to be better for them :)
We all deserve to be better.
Enjoy your weekend!
Rhonda~
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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Postby catfreak » Sat Sep 19, 2009 6:49 pm

Rhonda,

Since this is your first contact you need to write a health history or provide medical records. I wrote every illness I could remember and all my surgeries. My first MS symptom even before I new that's what it was. The more detailed the better. Dr Dake will read and contact you to talk.

I sent in my history, my MRI's and front and back of my insurance card. This was after my first conversation with Alex. Then Dr Dake called me and then I had to wait on him to give Alex my file so she could call me to make the actual appointment.

It takes some time to actually get to Stanford so be patient.

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 MaggieMae » Mon Sep 21, 2009 7:28 am

Can we e-mail Alex? I see Magoo said she has e-mailed Alex. We are still waiting on Dake's call. I know they are very busy, but I'm seeing where others have started this process long after I did and they are getting somewhere. I feel I'm getting no where. :(
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Postby magoo » Mon Sep 21, 2009 8:01 am

MaggieMae.
YES, email her. That is the only way I have contacted her. This way I have been able to introduce myself, and explain my situation. I am expecting her to call me this morning, <fingers crossed>!!!!
Best of luck :)
Rhonda~
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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Postby MaggieMae » Mon Sep 21, 2009 8:41 am

Where can I get the e-mail address? I have mailing address and fax, but no e-mail?
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Postby magoo » Mon Sep 21, 2009 8:49 am

I found it on this board with Dr. Dake's contact info. Here it is:
ADuran@stanfordmed.org
Rhonda~
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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Postby MaggieMae » Mon Sep 21, 2009 9:12 am

TY. How did I miss that? :D
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