This Is MS Multiple Sclerosis Community: Knowledge & Support

My wife who has mild MS, has been talking to an interventional radiologst. We got him quite interested in the whole CCSVI issue (he read Zamboni's papers), and was eager to do a doppler on my wife. After doing a 10 minute doppler, he did a few hmmm's, and then said there was something going on in the left jugular. This was a few weeks ago. He just contacted us, and wants to go ahead with a venography and angioplasty (if necessary). When my wife asked him about doing an MRV, he felt it wasn't necessary - the venography will show any problems.

This doctor is the head of department, and appears quite confident this is the way to go. No MRV since the doppler picked something up.

Any thoughts??

My only thought is that maybe your doctor should talk to Dr Dake who has done many CCSVI procedures. Could be some good advice there.

ozarkcanoer

tzootsi-
A doppler scan then venography if indicated is what Dr. Zamboni uses. Dr. Dake used MRV, because dopplers at Stanford were often inconclusive. It sounds like your wife's doppler indicated a problem in her left jugular. If you are uncomfortable with this doctor doing a venography without more of an explanation, ask for a consultation before your wife has a procedure. But an MRV is not necessary if the doc feels he has located a problem.
good luck,
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

Exactly the same situation here:

No doppler detectable flow in the left IJV when upright.

After much research, my vascular surgeon decided that MRV and CTA were not accurate enough to display possible malformations, because he admits that his eye is not experienced at all in CCSVI. Since there was indication that there is something wrong, angioplasty is very likely to be required, thus catheterization. He decided to take the DSA route, which is similar to normal angiography, but facilitates some digital processing.

http://en.wikipedia.org/wiki/Digital_su ... ngiography

In addition to that, it is possible to observe blood flow at a rate of about 6 fps (frames per second) and even the slightest anomaly can (theoretically) be detected.

I am having this scan and operation on Thursday and I am overanxious about its findings.

HTH.

The extremely nervous,

sou

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Shortest joke: "We may not be able to cure MS but we can manage its symptoms."

Interestingly, our doc knows Dake, and has been in contact with him! We'll keep you posted.

from the little i know, venography can see everything. just remember to check out your azygos as well. the only thing it cant "see" is the vertebral plexous. i d say go for it.

Exactly the same happened here. The Doppler wasn't useful; so they are going to set a trial call and MRV everybody.

But when???

The MRV is not a good predictor of CCSVI. The transcranial doppler and the venogram are. There is too much artifacting on the mrv. Your doctor is doing the right thing, and once he sees the problems on the venogram, he's already in your veins ready to do the liberation.

At this point, whatever works. There's no one-size-fits-all approach here, dopplers are useless in the hands of the unskilled, and/or using inferior equipment especially without transcranial. MRV's equally have their problems, if also done incorrectly. The two different approaches cannot be categorized into absolute terms, i.e. "good or bad". Since Ultrasound is SO operator dependant, even WITH the best equipment, some will be left with little alternatives until more UT testing, done properly, with the proper equimpment, is available to the millions who need it. CT, MRV, whatever it takes, and for some that might include just plain old waiting until the whole diagnostic situation improves.

If your doc sounds competent, and confident, and feels an MRV would just be redundant and unecessary at this point, because there is something clearly shown on the UT, then venogram in my mind sounds like a logical next step. All 4 of my stents were placed without benefit of an irregular ultrasound, it was perfectly normal. The MRV said otherwise, but MRV's of course can't readily detect incompetent valves and other issues.

Everyone presents differently, that's a big point here, some have glaringly obvious pathologies present like a big arrow saying, LOOK HERE, some have more subtle stuff happening that is more difficult. Zamboni won't be cloned any time soon, or his equipment, but they are definitely working on it. I know my venogram showed so much nasty looking collaterals that even people with no medical knowledge look at the pics and recoil. Ultrasound, squeeky clean, but of course there was good reason for that, once again, equipment+training deficiences.

Sounds like you are on a good path here from my POV, keep us posted! This month has been so laggy in the good/great news department ala testing, I personally know at least 5 people who've been tested, and they aint all at false creek, and all showed negative for CCSVI, but none have lost hope just because someone inexperienced with this new paradigm, either couldn't conduct the tests properly, or interpret them properly. While we are glad for the ones that have been "caught" like up at False Creek, much more remains to be done to catch more.

My thought: every time things get into a hole in this thing, no good news, not necessarily any bad news, just internet pieces tossed around to fill the void, we get another shot in the arm that revs things up again. I'm speculating that that very shot of adrenaline is coming real real soon. Kind of reminds me of when there's a big news story that's broadcast live, but then nothing is happening for awhile, and the reporters start reporting on each other, or stuff just to fill the gaps. That's kind of where we are at, but there are some real gems hiding all around us, and your story is just that, an inspiration to others to strike out on their own crusade and not wait for leviathan institutions to get things going...

Mark

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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