Catfreak's CCSVI journey

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

Catfreak's CCSVI journey

Postby catfreak » Thu Jul 30, 2009 11:18 am

I hope I am not jumping the gun.

Alexandra just called me and she has given my info to Dr Dake and she said I will be getting a call from him next week.

I will update when he calls.

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 peekaboo » Thu Jul 30, 2009 11:43 am

cool
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Postby Loobie » Thu Jul 30, 2009 12:53 pm

You are on your way girlfriend! To echo Holly....kewl!!
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Postby mrhodes40 » Thu Jul 30, 2009 1:33 pm

go stent-o-teers! :lol:
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 catfreak » Mon Aug 03, 2009 6:59 pm

Hi all,

I just got off the phone with Dr Dake. Wow, he is so nice.

He complemented me on the very thorough history I wrote up for him and said I was a great candidate for the testing and procedure.

He said Alex will call me tomorrow to talk about the next step and to talk to my husband and start looking into flights if I decided to come to Stanford.

Thanks to everyone who has worked so hard on all this info and to the ones who have paved the way for me to do this.

I will post more after I talk to Alex.

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 ErikaSlovakia » Tue Aug 04, 2009 3:41 am

Hi Cat!
Great news! Congratulation! I am happy with you!
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Postby Needled » Tue Aug 04, 2009 5:43 am

Congrats Cat! See, you didn't jinx yourself by starting your thread, you were just being proactive and getting a jump on it. :lol:
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Postby peekaboo » Tue Aug 04, 2009 8:09 am

I am going for my check up on the 13/14th if your appt is around then lets hook up

Holly
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Postby catfreak » Tue Aug 04, 2009 9:32 am

Holly,

In August or September?

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 peekaboo » Tue Aug 04, 2009 9:45 am

August... :oops:
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Postby mormiles » Tue Aug 04, 2009 10:19 am

Hi cat, We don't have a date yet, but since we seem to be rolling along in the same time frame, maybe we'll see you there. Hope so. It would be cool to see you or anyone else in this forum. Best wishes.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby catfreak » Tue Aug 04, 2009 4:42 pm

I talked to Alex today and she said it would be a few days before she could talk to me about a date. She sounded kind of exasperated and I told her that she may need to work full time and she said that is what they are working toward. I told her not to work too hard and just call when she gets to my file. She said it hard to co-ordinate patients schedules with Dr D's schedule.

She said when she got to the office this morning and had 5 follow-up patients and 4 new patients on her desk. I am one of the new and I assume Mormiles is also in that stack of files. So there are 2 other new patients waiting on appts.

I'm a little to impatient (like Lew)! 8O

It will happen in due time.

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 Jamie » Tue Aug 04, 2009 5:15 pm

yeah, we're struggling to get a follow up date too. Poor Alex.
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Postby Rokkit » Tue Aug 04, 2009 5:50 pm

catfreak wrote:She said when she got to the office this morning and had 5 follow-up patients and 4 new patients on her desk. I am one of the new and I assume Mormiles is also in that stack of files. So there are 2 other new patients waiting on appts.


I am one of the new. He called me last night. I feel kind of bad about taking up a slot if someone else needs it because I'm not bad off. My bladder's on vacation but other than that I'm in pretty good shape so if I get a slot and someone else needs it they can have it.

I'm thinking mid-sept would be a good timeframe anyway because Dr. Dake will be just back from fresh new learning at the symposium.

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Postby catfreak » Tue Aug 04, 2009 6:41 pm

Rokkit,

I would go next week but I figure it will be end of August to mid September before he has time with the symposium coming up.

Question? Do we want to be one of the ones that he presents at the symposium as a case study or do we want to, like you said, get him fresh from all that learning at the symposium?

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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