The kinds of venous malformations that have been found

[Sharon]

My daughter's right jugular vein was stenotic adjacent to the anterior arch of C1 - there was a boney compression of the right IJV at this location.

My left jugular was pancaked together for 3-1/2 inches. The valve at the junction of the jugular and the left brachiocephalic vein had narrowed segments. Two stents inserted - one at location of the valve

Sharon

[Mutley]

Great summary Ozark, this will be really helpful. I appreciate your hard work.

[shoshin]

I guess jugular valve problems have been covered, but I thought I'd stick my story on anyway since it does seem a little unusual. I had malfunctioning jugular valves on both sides. They looked like they were flapping up and down when they were supposed to be open so that was causing the blood to flow slowly and reflux.

I did not have any stenosis, although there was some tapering around the valve area. So nothing definitive could be seen on the MRV. Dr. Dake saw some black lines around the valve area and there was a largish (larger than the main vein) collateral vein going more-or-less just around the right jugular valve. There were no large collaterals on the left. So he thought it looked suspicious, but the collateral vein could possibly just have been a normal variation. Fortunately for me, it looked suspicious enough that he wanted to at least do an exploratory CT venography, which confirmed the abnormality and he performed balloon angioplasty on both sides.

sho

[Zeureka]

So "pathologic valves" are also treated by other doctors with "ballooning" , that's what I wanted to know.

And stent? Would a stent really make sense to insert at the point of the valve obstructing the blood flow, squeezing the abnormal valve to the wall of the vein? Is the actual valve function (there to help avoid inverse blood flow) then not disturbed?

This may be science fiction (so maybe not yet possible now), but would it in principle not be better to replace the malformated valve with another synthetic functioning one? I've seen some registered US patents for that developed by the Ferrara Zamboni team...but it may be a future intervention technique...

[ozarkcanoer]

Bump.....

[Ruthless67]

OC,

Thanks for all the hard work! This post is way too interesting to let it fall too far down the site. Let’s keep it bumped until it can be made a sticky!

Lora

[Cece]

I thought this might fit here. It's from Dake's presentation at the hamilton conference:

"Lesion etiology is non-specific (congenital/hereditary, osseous impingement, arterial compression, post-inflammatory, arachnoid granulation, etc., alone or in combination)"

This is in reference to the lesions or occlusions in the veins. It sounds like congenital is only one possible source of an occlusion/lesion. Osseous impingement sounds like build-up within the vein. Arterial compression has the carotid artery as the villain. Post-inflammatory...although I'm not familiar with what causes veins to be inflamed. Arachnoid granulation...I do not know what this means.

CCSVI has been classified as a congenital venous malformation, but there would seem to be instances where that is true and other instances where it is acquired.

[Zeureka]

I thought this might fit here. It's from Dake's presentation at the hamilton conference:

"Lesion etiology is non-specific (congenital/hereditary, osseous impingement, arterial compression, post-inflammatory, arachnoid granulation, etc., alone or in combination)"

This is in reference to the lesions or occlusions in the veins. It sounds like congenital is only one possible source of an occlusion/lesion. Osseous impingement sounds like build-up within the vein. Arterial compression has the carotid artery as the villain. Post-inflammatory...although I'm not familiar with what causes veins to be inflamed. Arachnoid granulation...I do not know what this means.

CCSVI has been classified as a congenital venous malformation, but there would seem to be instances where that is true and other instances where it is acquired.

Thanks Cece, Makes sense to me... whether congenital or acquired, the jugular/azygos vein blockage as such seems to be at least one factor in the development or amplification of certain damage which may lead to the outbreak of certain MS symptoms. And other factors may play in the development as well. But I think already the discovery of such an important underlying factor is an immense break-through!

Just my brainstorming idea: People that have a congenital venous malformation or develop it later are therefore more likely to develop MS, but will not necessarily develop it depending on whether the other factors (environmental such as e.g. climate/virus/diet and maybe other genetic) are in their favour or not...and this could explain CCSVI in the 60% MSers versus 20% non-MSers of Buffalo? So maybe the 20% could develop MS if other environmental factors in their life or additional genes would be different? This would also explain why identical twins do not always both develop MS. Sorry if I'm maybe in the wrong topic of the forum for this...

[catfreak]

The Arachnoid Granulation is me. It was a cyst that formed inutero and ended up next to my left jugular obstructing the flow. Dr D said it was soft like marshmallow and when he stented the jugular it just indented the cyst.

The cyst is still there next to the jugular with the stent keeping it from mashing or pressing on the jugular. This the best explanation I know how to give.

Cat

[cheerleader]

Hi Spidey-Cat!
Jeff was the inflammatory one...his veins are sticky, don't stay open. Dr. Dake said he'd never seen veins like his before. I have a theory that it might be related to a collagen/connective tissue disorder, which is congenital. Spidey Cat's cyst was congenital, too. Osseous impingement is when the bone pinches the vein...can also be congenital or happen after injury/accident. So many ways to have messed up veins, and Dr. Dake has seen alot of that!
cheer

[bluesky63]

I hadn't posted this before but this seems like a good place. I am one of the people who was scheduled for a procedure with Dr. Dake but got postponed at the end of December. I went for testing anyway. He was just amazing. I can't say enough about him.

I was all the more sure of the testing results because he explained that he does not write up the report; an independent doctor reviews the films later and writes up a report based on what that doctor objectively sees -- and we would have to assume that this is going to be a doctor who is not biased to look for CCSVI since it's so new.

Dr. Dake reviewed the films with me right after the MRV, and what he said was slightly different from what was on the report I received later, which also made sense to me. When I have an MRI, the info I get from reviewing an MRI in the office with my MS specialist can be more detailed and useful than what's on the report from whoever wrote up the MRI. Often the MS specialist finds things that were missed by the doctor who did the report.

We should remember that when we're looking at all of this info -- different specialists can look at the same films and see different things. This is still an art, not an exact science.

That said, here's a summary of my MRV from Stanford, with allowances to the fact that I may well be messing something up here by accident -- but in the interest of helping this great thread, here's my best effort!

* arachnoid granulation in the left transverse sinus

* flattening/"pancaking" of the bilateral internal jugular veins at the level of the C1 arch (moderate on the right, severe on the left)

* flattening of the bilateral lower internal jugular veins at the approximate level of C6 (moderate/severe on the right, severe on the left)

* azygous needs "more investigation"

[mshusband]

I have a question ... I understand why Dake stopped treating people (if a clinical trial is what's next) ... but why did they stop testing people for CCSVI?

Like ... why couldn't someone call and go get tested by him?

Then ... they would at least have the information for the future ... or other doctors?

[ozarkcanoer]

bluesky,

About the epidural collaterals in your pelvis : were you scanned all the way from the top of your head down to and including your pelvis ?

ozarkcanoer

[astro]

I find it very interesting about all the different kinds of venous problems that have been encountered by doctors when examining CCSVI patients.

Would all of these necessarily show up as reflux on an ultrasound, or would some only be detectable by MRV or venogram?

[Zeureka]

I find it very interesting about all the different kinds of venous problems that have been encountered by doctors when examining CCSVI patients.

Would all of these necessarily show up as reflux on an ultrasound, or would some only be detectable by MRV or venogram?

Visible also on the ultrasound color-doppler: obstructed blood flow by a pathologic valve, even if no reflux (that is my case). Maybe for this jugular issue I would be one of the "borderline cases" of Buffalo?
But downside of doppler: you cannot check the azygos vein by the extracranical color doppler, only via MRV or angiography.

Zamboni (it's on the Hilarescere web-site) and think also Buffalo will now start research on doppler versus MRV, to understand which technique shows what best.