This Is MS Multiple Sclerosis Knowledge & Support Community

First of all, I have to confess - I do NOT know exactly what I am doing. I have read the forums as much as I could, I have read some of the papers as much as I could.

But I still can not claim that I now am familiar with the vein structure, with all the ways they can be examined and with what we, potential CCSVIers have to insist on during our tests.

Having said all that - I visited a local (yes, I said “local” ) vascular specialist and asked for the tests on my jugular and azygos veins. I was (upon my insistence) scheduled for

1) Venous angiogram which, I in my limited knowledge, assume to be what is here referred to as “venography”. Again - assuming this is for my azygos.
2) Vascular ultrasound, which I again assume to be a Doppler test (I did mention Doppler during the visit with a doctor and he nodded as in “but of course it’s a Doppler, what else?” kind of way). This I take it is going to be for the jugulars.

The doctor was not outright dismissive, he did listen to my very incoherent recital of the CCSVI as a cause of Multiple Sclerosis speech, but said that he thinks it’s going to be a “wild goose chase”, but he is willing to send me for testing to “make me feel at ease”.

Also, he was not very keen on what he perceived as “patient telling him how to run tests” when I tried to show him the protocols that I brought with me.

He was also shaking his head when I mention “stenosis” because as he said “if there was an occlusion in the veins you would be able to palpate the bulge above it”... Again, with my limited knowledge I tried to argue along the lines with the other vein taking the load and the collaterals taking the load and not complete blockage, so flow exists but it is limited.... Um. I don’t think he was convinced.

At any rate, I am having the tests done. I am worried though, because as I understand, if not done exactly per protocol, they (the test) might not reveal anything.

What should I specify?

I am now nervous, even though I know this is not my last chance or anything.

Suggestions? The ones who where on the same path? Doctor Sclafani?

That's a great first step! I was also just scheduled today at a local vascular doc to begin testing. Wild goose chase indeed.

I think that's fantastic...his skepticism or disbelief may mean that he'll miss a more minor stenosis but who knows, maybe yours is one of the blatantly obvious ones. No way to know but to find out...best of luck!!

what if the veins are flattened as proposed - this would not lead to a bulge above the stenosis

ikulo wrote:That's a great first step! I was also just scheduled today at a local vascular doc to begin testing. Wild goose chase indeed.

Yay! Will compare notes sort of speak

Cece wrote:I think that's fantastic...his skepticism or disbelief may mean that he'll miss a more minor stenosis but who knows, maybe yours is one of the blatantly obvious ones. No way to know but to find out...best of luck!!

That's what I am hoping for! Thanks

rssugg wrote:what if the veins are flattened as proposed - this would not lead to a bulge above the stenosis

Agh! I wish I had the wits to respond that way Oh well, live and learn, right?

rssugg wrote:what if the veins are flattened as proposed - this would not lead to a bulge above the stenosis

Absolutely! some people even have mising jugulars...There are a variety of issues that could potentially exist, and not all of them are so obvious as to be palpable. I think that's why the diags are based on doppler/mrv/venogram