This Is MS Multiple Sclerosis Community: Knowledge & Support

I've been waiting for the MSNews post from Accelerated Cure for MS (they helped with the fund raise for the 1st LDN trial at UCSF). They always attend ECTRIMS and offer analysis. I was disappointed they didn't delve into CCVIS, but at least they noted the interest level. I'm a news contributor too, when I get my appointment at Stanford, I will post a news item that will go out to their readership w/ a summary on CCSVI (will have Marie check it first for accuracy).

Here's the note:

"I did notice that Robert Zivadinov's poster on chronic cerebrospinal venous insufficiency (CCSVI) had a big crowd. There seems to be growing interest in this theory that insufficient blood drainage from the brain plays a role in MS."
http://www.acceleratedcure.org:8080/node/3571

Sammy-
Hollie and the folks at Accelerated Cure are very interested in following up on CCSVI. There was a small presence at ECTRIMS this year, with the Jacobs Neurological Institute/Ferrara University poster- but no formal presentations. It is good to know that the poster got some interest.
As the studies are published and we have more results, I'm sure there will be more information on the AC site- and I hope they'll be able to help out funding CCSVI studies in the near future.
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

mrhodes40,
I think that the approach you indicated in your post would be the right one in order to achieve treatment taking MS, and therefore the neurologists, out of the equation. The venous obstructions represent a condition that is worth treating in its own merit and a vascular surgeon or a vascular radiologists should feel the duty of care of such patients.
The major problem is up-stream, i.e. to be able to obtain a diagnostic test (doppler study) which showed the problem. I would think that the family doctors should be requested to supply the appropriate referral.
GiCi

Hi Gici, the major problem that I have encountered is whether the stenosis or blood flow issues are recognised. I had 2 profs in the UK look at my MRV and see no stenosis whereas Dr D saw stenosis.
Their argument to me was that if you are lying flat veins collapse so they may appear to be flattened on a CT scan or MRV. Then when I had the doppler again they couldn't see the stenosis (at C2) and the blood flow seemed normal. I told them I was prepared for them to look at my veins internally (is that called a venogram?) but they said they wouldn't because they didn't have enough evidence to warrant it.

As I am only a patient, it is hard for me to know what to say in this situation to the dr's.

Hi LR1234,
A venogram is rather a simple procedure but it is what is called "invasive". Although the risk of complications is very low, it does exists and no professional person would undertake the procedure in absence of convincing "non-invasive" tests. A doppler study in the semi-sitting position should be able to demonstrate venous obstruction and reflux.
I hope this helps in clarifying the issue.
GiCi

I had the doppler laying flat and then sitting up (totally vertical)
Is that what you meant by semi-sitting?

Thanks for you replies, much appreciated

LR1234, since you are in the UK, maybe you can go to Belfast to the same doctor GiCi is using?

I think Gici had the inital operation done by Dr Z in Italy but if the new dr is willing to do the procedure from scratch, I would be really happy to go to Belfast!!

I know that the jugular veins normally collapse when we are upright, and open up again when we are prone.

I'm wondering if there could be stenoses of the alternate drainage routes that are not noticed as a result? This might answer some of the questions raised about "why do I have issues when upright if the problem is just in the jugulars?"

...

and a notion that just floated along -could the reason that Dake is not seeing azygos vein involvement be that MRVs are done only in the prone position - and the azygos vein issues are only apparent when standing? This is probably not the case but thought I'd throw it out there.

I will ask him this when I get to talk to him today. Anyone want to add more to my understanding? Like, I have (quiet) lesions in my brain, but long lesions up & down my spine, does that implicate the azygous?
Would be nice not to have to go for a 2nd procedure if it reall is the azygous.

From my experience in Ferrara I feel eager to share my understanding of the issue.
The doppler study can show whether there is reflux of the blood to the brain and the obstruction in the jugulars. I do not think that ultrasounds can show whether there is a problem with the azygos vein, which can probably be inferred by the location of the lesions. My venogram showed severe narrowing of both jugulars and a dilated azygos vein opening. In my nephew the venogram showed a twisted azygos entry into the superior vena cava and it was treated with dilatation first and with a stent following reccurrence. To my knowledge the twisting of the azygos vein was not diagnosed in advance.
Zamboni has not used stents in the jugular veins so far because of doubts regarding the behaviour of the prosthesis in a highly mobile location: the azygos vein is situated in a location (the chest) which is pretty stationary.
GiCi

So it sounds like Zamboni and Dake's procedures are different but they are getting the same results? If this is not correct I apologize.

The diagnostics are different in that one is focusing on flux abnormalities (Zamboni), while the other is focusing on malformations (Dake). The results are not exactly the same. Zamboni sees flux problem in the azygos vein in progressive patients (AFAIK both primary and secondary progressives), while Dake doesn't see malformations in the azygos veins in any patients. This might be a problem of low stats/selection in that Dake's patients may have been more often early RRMS, but it's not clear. Other's may be able to clarify further.

redundant - removed

I can clarify a little bit here


This is an anatomy issue, a stenosis can be caused by a lot of things. In the case where the tissue OUTSIDE the vein is pressing it shut, and that tissue is muscle or fat, if you blow up a balloon inside the vein, all you get is a temporary moving of the tissue. Press your finger into your arm; does the arm tissue stay pressed down? Of course it does not, a balloon dilatation when that is the kind of tissue pressing on the vein is not going to work. If you put a stent in then it can resist the tissue pressure and keep the vein open. Those of us with stents in the high jugs have this.

For other kinds of stenosis, for example if there is a buildup of tissue INSIDE the vein you can nip that out...Zamboni does a lot of that it seems. You could possibly also balloon it. You could put a stent in that location as well. That's why vascular docs go to school for so long....

Sometimes if it is congenital tissue, which some of it appears to be (based on Bologna notes) then it may grow back even if removed thus needing a repair repeat. In that situation where such a repair did not last I understand that Zamboni is using stents too.



Actually, Dr D has treated a number of azygos veins as well as at least one brachiocephalic that he discovered that the person elected not to repair. He has not seen as many azygos proportionally as Dr Zamboni has. This is a mystery to me, obviously more can be learned.


Yes true! But please note that Dr Zamboni and Dr Dake BOTH do venograms at surgery so have the same data to look at at that point. Before surgery we have had trouble getting useful dopplers in the US so the diagnostic to see "IF" a person has a venous abnormality or not has been MRV and MRI or CT scan with contrast. Rad is right that MRV/MRI focuses on the tissue and doppler focus on flow...

Frankly the CT uses high, possibly concerning, amounts of x ray radiation but is priced at around 1,000, but the MRV MRI is at a shocking 8,000 dollars-- neither of these are reasonable for long term follow up and monitoring. so we NEED dopplers here too. My insurance refused my repeat MRV. I had to get a CT, my 4th one this year. If I need to recheck my blood flow, say in a month because I felt dizzy or something

Apparently Jacobs is planning on training people. (Bologna notes).

My initial dopplers at the university near me were 500 dollars. If we can get the expertise needed at our local sonographers we'll be in better shape

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