Coach -To Stanford and Back

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

Postby Sarahbellum » Sat Oct 03, 2009 8:17 pm

mrhodes40 wrote:
Another possibility is that the methods for diagnosing CCSVI are different enough in Zamboni and in Dake, and that you would have fulfilled two of the five Zamboni criteria for CCSVI. Perhaps somebody else will know if this is at all a possibility


The European doctors LIKE the doppler. They WANT to use the doppler to see if there are turbulent, or swirling or in some way chaotic blood flow that would alter shear stress. In this idea someone could have essentially open stents but a small area of turbulent flow that potentially could still cause issues. Dr Dake's point of view is strictly venous hypertension, theirs is turbulence and altered shear stress.

It appears that docs have to b trained by zamboni to be able to do dopplers his way, no one besides Zamboni-trained-Jacobs has luck with it in the US, though Simka was able to figure it out by working at it.


Let me see if I have this right:
Doppler is the diagnostic tool
If the Doppler shows blockage then the person is a candidate for stent procedure?

Is Dake the only one doing the stent procedure in US now?
Does insurance cover?
If not, what is out-of-pocket cost?
How many days do out of town patients stay?

Thanks
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Postby CureIous » Sat Oct 03, 2009 9:52 pm

Heya Sarah, did you get my pm answer? You have to click on private messages it won't say you have a message.

Far as I know it's still MRV, and the ultrasound is questionable. I had an ultrasound, but Dr. Dake might be stopping those. Things change constantly, usually for the better!
My insurance covered a lot of it, but still haven't got the bill so hard to say, everyone's situation is different. The MRV will tell Dr. Dake what he needs to know, then when you are getting the procedure, he is doing a "live shot" of the same area. As far as I know he is the only one doing this. His experience in this area is impressive, his credentials impeccable.

The length of your stay is dependent on a few things, mainly scheduling, afternoon, evening, runs the gamut, but basically count on 3 days and 2 nights as usual, but it can be longer, but probably not!

Don't forget to investigate the risks here too if you haven't already. That cannot be stressed enough.

Mark Miller
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 CureOrBust » Sun Oct 04, 2009 4:28 am

Sarahbellum wrote:If the Doppler shows blockage then the person is a candidate for stent procedure?
Dopplers from my understanding, do not necessarily show a specific blockage. They may simply indicate a flow abnormality, which would be caused by a physical abnormality; which could be a blockage. However, for example, one patient here has an inverted valve.
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Postby coach » Sat Oct 10, 2009 7:20 am

Saw the neurosurgeon at Emory 10/7, Dr. Daniel Barrow. Turns out he had written a book on bloood vessel malformations in the brain about 3 years ago. Very nice and easy to talk with. He said there was very low risk associated with the use of blood thinners in my case. Seemed to be interested in w That is going on at Stanford. Anyways I got a green light to go ahead with the angio. Am waiting to hear back from Alex about rescheduling. Thanks for the concern and encouragement.
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Postby mrhodes40 » Sat Oct 10, 2009 9:35 am

COach great news there! A way forward. maybe start a new thread for your new adventure so we can follow you as you go...
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 » Sat Oct 10, 2009 9:40 am

Leadelle, This is exciting news. I'm glad SOMEthing is going to be done! I was upset when we were talking in the waiting room thinking that they would still be left scratching their heads. Very encouraging and best of luck!
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Postby coach » Sun Oct 11, 2009 11:38 am

Thanks Marie and Lew. Still have limited access to computer so will be checking infrequently.
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Postby Jamie » Sun Oct 11, 2009 12:04 pm

Keep on trucking Coach!
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