Vascular Specialist - What tests?

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

Vascular Specialist - What tests?

Postby IHateMS » Sun Aug 30, 2009 10:42 am

What tests should I request? The 'chosen' tests seem to change.

My PCP supports the idea. He is concerned about my swollen/discolored ankles/legs.
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Postby mrhodes40 » Sun Aug 30, 2009 11:40 am

Well when you see a specialist usually they have some ideas of their own and will want to look at things the way they assess.

However since this is new the person may not have an idea about what to do specifically. Some people have had Dr Dake read their CT venography after the local person already gave them their opinion. Marc mentions that the standard reading on his was normal where when the scan was sent to Dr Dake he indicated that narrowing of the high jugs was a problem. Marc later mentioned that the initial radiologist did "not know to check the jugular veins" and later people he asked to look at the scans who were asked to comment specifically on the narrow jugulars that Dr Dake mentioned agreed there did seem to be narrowing of interest.

I do not know if Marc got any special instructions for his CT ahead of time From Dr Dake or if it was just a standard venogram CT.

Several people have done this "CT venogram somewhere other than stanford " arrangement, so maybe they will all come and say whether they had special instructions from Dr Dake ahead of time .

Dopplers as done by technicians in America have not proved to be very useful for people as they seem not to know how to interpret the data with the same skill as DR Zamboni's team.

My own doppler done at Stanford, just hours after the MRV showed a severe blockage, was completely "normal" according to US standards...

hopefully someone else will know more

ps if your vascular specialist wants to try the dopplers the technical methodology is in the research thread
http://www.bentham.org/cnr/openaccessar ... /006AG.pdf

my local university did try and did find reflux in my vertebral veins but would not treat or anything like that...
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 IHateMS » Mon Aug 31, 2009 9:09 am

Thank you.

My appointment is this afternoon. I am sure the doc has never heard of CCSVI.

After today, he will have at least heard of it, not that he will listen or remember.
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Postby mrhodes40 » Mon Aug 31, 2009 11:21 am

Wow, good luck IHMS!! I hope you get some information that is useful
:D
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 IHateMS » Fri Sep 04, 2009 4:07 am

I had him at Dake. When I told my vascular guy the history of CCSVI, his interest increased exponentially when I said Dr. Dake.

My doc said Dr Dake, do you mean Michael Dake? He was immediately interested b/c of his respect for Dake.

My doc is going to investigate more and see what exact tests are needed. He is concerned with operator errors, etc.

Perhaps the reason is b/c my doc is also not driven by money, but by helping people. He works for the university, not a private practice.
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Postby Arcee » Tue Sep 08, 2009 4:56 am

That's a great story. Before I had the surgery, I spoke with a couple of doctors who also had an extremely high opinion of Dr. Dake and that definitely encouraged me. congratulations on getting things moving!
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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Postby mrhodes40 » Tue Sep 08, 2009 6:43 am

I agree way to go IHMS!! Dr Dake has huge stature he is an international figure in the vascular field. one of our best and brightest.
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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