This Is MS Multiple Sclerosis Community: Knowledge & Support

I checked with the guy to make sure it was really him - yup:



http://medicalmyths.wordpress.com/about/#comments

yeah...whatever. I'll take the opinion of the cardio-thoracic doctor at Stanford over McGill. Just my opinion....
Dr. Dake's too busy treating patients to blog and post random comments on message boards.
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

With all due respect ....Dr. Rose ...would benefit from doing more research and less time on his soap box .

But entertaining none the less.


Cure ? Never heard Dr. Z say that. Did I miss something ?







Mr. Success

Yes, I heard from Czech patients a month ago that one Czech doctor went for 6 months to the US to get training for Doppler and more regarding CCSVI.
So far, I do not know his name.
Do not tell anybody but if I were him I would not return.
Erika

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Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse

Sorry if I intrude but if we read "1. What is CCSVI?" from the thread "CCSVI - Just the facts, Ma'am" ( http://www.thisisms.com/ftopic-7374-0-d ... rasc-.html ) it explain quite clearly the "reflux" and “slowed perfusion” effect that leave iron deposits hypoxia etc....

Not that I am over-excited, but it is pretty different than the assumption that a pressure would break the BBB...

But I may have miss something, in which case please disregard my comment

Cheers!

It is not necessarily (or perhaps, not only) the high pressure that is a problem, but also the loss of the normal shear stress that occurs with healthy blood flow that is the problem. Loss of shear stress causes changes in the blood brain barrier which makes it more permeable.

Please see this discussion of Dr. Simka's letter on the Zamboni paper.
http://www.thisisms.com/ftopicp-65847.html#65847

The change in pressure after stenting or after angioplasty indicates that the stenosis is causing a problem with the blood flow and that the collateral veins are not sufficient in creating an alternate blood flow pathway.

NHE

That what was implied in my post; but sorry English is not my native language; so I probably did not express myself correcty :

Apologizes.

I appreciate you bringing this up. I am going to a vascular surgeon this Wednesday. I am bringing the protocols for doppler and for MRI/MRV. I am only scheduled for an ultrasound right now, but maybe I need to request an MRI using the correct protocol.
I do believe, strongly, that I have CCSVI and I feel passionate enough to stay seated in the doctor's office until he agrees to examine me more thoroughly and find the problem. But he may find something on first try and be willing to fix it. That would be nice. =)
I am worried about the lack of expertise, but I feel finding someone local with be a lot more doable and my insurance will cover it here and not elsewhere.
Any advise for me to do or take on Wednesday is welcome. Thanks!

What exactly is the protocol & where did you find the info. I want to see my doctor but need info to show her. Thanks

P>S> Good luck with your test.

The ultrasound protocol is here:
http://csvi-ms.net/en/content/how-perfo ... t-dr-simka

And the MRI protocol is here:
http://www.ms-mri.com/protocol.php
and more detailed here:
http://www.ms-mri.com/docs.php

I am wondering if a venography would be more conclusive than an ultrasound, but cheaper than an MRI :
http://en.wikipedia.org/wiki/Venography

Venography is invasive it is in an operating room with a catheter running in your veins and dye injected directly....

At stanford you get MRI MRV and if they see something then they schedule you for surgery, onced there they do venography then immediately through the same intravenous catheter they do the repairs........

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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

I want to add to this thread reference to the difficulty Marc had with the interpretation of his scans

see this topic http://www.thisisms.com/ftopict-8876.html

He had actual venous scans that a radiologist said were normal, a second friend radiologist said normal, Dr Dake said stenosis left and right jugs, then the NIH agreed there is stenosis high in the left jug, but not the right.

With regards to the difference over the right, I want to add to that that these scans done ahead of time are not definitive--it is not that a person would get necessarily a stent in both the left and the right just because a scan ahead of time looked stenosed--- the first thing they do in the cath lab is a venogram and they get better pictures of anything they saw ahead of time on scans and then they decide what actually needs to be repaired and how.

The scans ahead of time are to see IF you get the venogram....the venogram is to see IF you get a balloon or stent.

I happen to know too that Island Girl had a questionable looking spot on the scans ahead of time (MRV MRI in her case) and when they went in with venogram they decided it was not something that needed repair and they pulled the venogram catheter out without doing any balloons or stents or anything.

But I wanted to point out that fairly sophisticated scans were done for Marc and there was considerable disagreement about what they meant. If I understood it correctly the NIH knew that Dr Dake already had said that there was a stenosis on the jugs so they knew specifically to look for it.

I wonder Marc if the other docs knew what Dr Dake thought he was seeing as well or if they knew what the CCSVI idea would be and thus had an idea of what to look for?

This is an issue for all of us.

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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

A CT Scan is also another option. But I have read that it has a radiation profile that is the equivalent of 50-100 chest X-Rays. ahhhh... no thanks.

Wow, I didn't know it was so potent. I'd pass, too.

I expect he got big bucks from medical companies like bayer and so on...
Few million make people to do what they want.

Sorry, but I am sure that they have already start their defences big time.