Zap Goes to Stanford (Dec)

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

Zap Goes to Stanford (Dec)

Postby zap » Tue Sep 01, 2009 11:50 am

Well, it's finally on ... from the time I was first diagnosed in 2006, I have thought the answer lies this way (Schelling's "Venous Pressure Theory" explaining Dawson's Fingers lesion pattern made so much sense), and now it's time to put my neck out, literally.

After playing phone tag with Dake's office since June, I'm finally scheduled to go get scanned on December 7th.

I could have signed up for as soon as early Oct, but between my GF's schedule and my cautious desire to see what happens after the Sept 8 conference, a few more months of experience for the brave early guiniea pigs, etc, I wanted to push it into December.

(OK, and maaaybe part of it is that I live in Minnesota, and wanted to get the most bang for my buck by going to California in the middle of winter ... heh)

Thanks so much to those who have gone before, and to everyone who's helped make this avenue a reality I can explore.

Gabriel
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Postby Needled » Tue Sep 01, 2009 11:56 am

Awesome!! I'm excited for you. And the timing sounds great. Nothing against Minnesota weather, but I'd be all in for a visit to sunny California in December. I think you'll be there right about the same time as Prof8?
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Postby Loobie » Tue Sep 01, 2009 12:04 pm

Good deal Gabriel!
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Postby cheerleader » Tue Sep 01, 2009 1:10 pm

congrats, Gabriel-
When you go out to Stanford it will be:
-one year since we all read the Zamboni on line here at TIMS
-three months after the conference
-seven months since Jeff got his stents
-almost 30 years since lieber Dr. Schelling noticed venous issues in MS patients.

Alot more will be known by December, but in terms of medical research, it's still the early days. I'm so thrilled to see Dr. Dake keeps booking more and more patients. He was going to stop in the summer, then the fall, now....? His new career?
happy for you, zap!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Tue Sep 01, 2009 1:20 pm

Zap, there is nothing at all wrong with waiting for more findings to come out, CHeer makes a very good point about where things will be: still early but some things learned along the way already.

Just in this short time stent sizes have been moderated for better quicker healing and coumadin has been dropped .

I have guessed before that people who get treatment 5 years from now will get something different; that is already true.

I am pleased for you that you are going to get an opportunity to be assessed.
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 Loobie » Tue Sep 01, 2009 1:46 pm

Just think of all the screw ups he will have learned from by December :lol: 8O :lol:
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Postby prof8 » Tue Sep 01, 2009 2:04 pm

Zap, I will be out there the same week you are. My dates are Dec. 9 and 10. Perhaps we will run into each other! I like knowing there will be more surgeries behind us as well. And it will be interesting to see what comes out of the Bologna conference. :)
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Postby CRHInv » Tue Sep 01, 2009 2:13 pm

Good news Zap! I am just starting to work on this, so it is nice to hear about your scheduling. This is really an exciting time. Bless all those who got this going. Now, the wait. Hang in there!
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Postby zap » Tue Sep 01, 2009 2:28 pm

Another good thing about the delay is that I do not have a GP ... I went from "no doctors in my life at all" straight to a Neurologist (who does not support CCSVI at all).

Without the Coumadin being used, is it still going to be crucial to have my blood clotting factor or whatever it is measured before and after, etc? Assuming that I need to get one prior to my trip to Stanford, what will I need from my brand new doc?
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Postby Sharon » Tue Sep 01, 2009 2:28 pm

Good for you Gabriel! The timing could not be better...nice weather and a few more will have been treated. You have completed the hard part...making the final decision to go ahead with the testing and the procedure.

Sharon
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Postby Loobie » Tue Sep 01, 2009 2:57 pm

zap wrote:Without the Coumadin being used, is it still going to be crucial to have my blood clotting factor or whatever it is measured before and after, etc? Assuming that I need to get one prior to my trip to Stanford, what will I need from my brand new doc?


I think I'd put that on your list of questions for Dake. I would REALLY be looking forward to no coumadin. I hate that crap. I've started a list of stuff I need to ask him. He's a high energy guy and you can get caught up in what he's saying pretty easy, so this time, I'm taking a list!

I usually come on here and find most of the answers to my questions, but there are a few that only he can answer. I'm really glad to hear you're doing this!
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Postby Sharon » Tue Sep 01, 2009 3:23 pm

Zap I did not have an INR test before going to Stanford, but I did have my GP on board to do the testing. The GP follow-up is the important thing.

Sharon
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Postby CureIous » Tue Sep 01, 2009 3:52 pm

:)
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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