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My MRI scan shows lesions in both brain and spine. Assuming, CCSVI is applicable to me, does it mean I have problems in both jugular as well as azygos veins?

I have spinal and brain lesions but Professor Dake could only find stenoses, albeit rather large one in both jugular veins.

Makes sense to me...that lesions would only be level or higher than where the stenosis occurs...it offers a good explanation for why some people get hit with spinal lesions and others only brain...was there ever an explanation for that in conventional m.s.-as-strictly-autoimmune theory?

gibbledygook wrote:I have spinal and brain lesions but Professor Dake could only find stenoses, albeit rather large one in both jugular veins.

Makes me feel a bit better that azygos might not be involved

But still does not seem logical going by CCSVI theory. If I have lesions in spine, it would be fair to assume that there is reflux happening back to spine. This can happen only if there is stenosis (or any other defect in azygos). Just wondering ...

Ni, it isn't. A blocked IJV leads to increased load and altered haemodynamics throughout the whole vertebral plexus. Having an azygos' stenosis would make matters even worse. The higher segments of the spinal cord would suffer more, though.

sou

Just curious if anyone has tested positive for CCSVI, but has no lesions?

Salvatore24 wrote:Just curious if anyone has tested positive for CCSVI, but has no lesions?

Me.

There were a lot of controls in the first 500 of the BNAC CTEVD study who tested positive for CCSVI. There was no report if they had lesions or not. I hope it won't be too long before Dr Zivadinov reveals more information.

ozarkcanoer

gibbledygook:

I have spinal and brain lesions but Professor Dake could only find stenoses, albeit rather large one in both jugular veins.

Ditto on me, all stenosis collarbone and above for me, but spine plumb full of lesions (C2, C3-7, T3-4, T6, T12) Brain: Dawson's fingers, old lesions and black holes, no new lesions since 2004.

So this has plagued me too, is lesion/stenosis location related, or predictive of each other ???

sou:

blocked IJV leads to increased load and altered haemodynamics throughout the whole vertebral plexus

sou - thank you! So stagnant blood at any point can cause lesions, or the activated T-cells are just released throughout the CNS and cause damage regardless of stenosis location.

And Dr Sclafani (thanks!!) made comments yesterday at TIMS, that the big issue is rate of flow. So I imagined a normal person having a complete circulation exchange in 4 min like a roaring river, while mine took 8 min like a lazy river, because of the stenotic beaver damn in neck! I'm surprised my heart didn't pop or poop out.

Explains the roating pulse noise that I and others have reported. That has stopped for me. This past week I turned a curve, no more shoulder pain, and walking better!

I have about 40 brain lesions and as far as I know 0 spine lesions.


Talk of a "roaring pulse noise" caught my attention. When my fatigue and headache come on me my head is hot and it pulses and I can hear it very loudly. It is so loud that I can nod my head at the beat. It is horrible. It just seems that CCSVI has to account for this somehow. These are the kind of symptoms that are most difficult to describe.. I'm almost ashamed to try to tell my neuro lest I be called neurotic or crazy. Maybe I'm not so crazy after all. Boy do I want to go to BNAC and get the US and MRI/MRV.

Thanks for listening to my rant .

ozarkcanoer

If you look at Zamboni's paper, Zamboni et al Dec 2008 "Chronic cerebrospinal venous insufficiency in patients with multiple sclerosis" Figure 3, it outlines the 4 different patterns of venous malformation that he found.
They all variously alter the drainage of different veins, and it shows the drainage of the azygous vein can be altered when stenosis is found in the jugulars. I assume this could cause spinal lesions, without the need for actual stenosis in the azygous.

Interesting, suze, I'll try to go back and reread that.

ozarkcanoer wrote:I have about 40 brain lesions and as far as I know 0 spine lesions.


Talk of a "roaring pulse noise" caught my attention. When my fatigue and headache come on me my head is hot and it pulses and I can hear it very loudly. It is so loud that I can nod my head at the beat. It is horrible. It just seems that CCSVI has to account for this somehow. These are the kind of symptoms that are most difficult to describe.. I'm almost ashamed to try to tell my neuro lest I be called neurotic or crazy. Maybe I'm not so crazy after all. Boy do I want to go to BNAC and get the US and MRI/MRV.

Thanks for listening to my rant .

ozarkcanoer

When I sleep, I unconsciously tend to push my head to the wall of the bed (I feel better). In this condition, I can feel the beats. Initially this was frightening.

Maybe a bit off topic, but I believe CCSVI has given hope to lot of patients as:
- it is no longer a disease of unknown autoimmune disease (known devil is better than ...)
- lot of issues reported by MSers are generally dismissed in "in-your-head". CCSVI explains quite few of them convincingly.

I have no doubt, a lot of unknown about MS as the direction of research was completely in the wrong direction ...

My husband was treated for ccsvi, but he has very few lesions, which have not increased since his diagnosis 8 years ago. They are not active and they are quite small. But he seems to be ppms.....perhaps there are lesions in other places, which are never searched for with the normal MS prescribed MRIs?

I may be wrong on this one, but i remember reading that Zamboni never found lesions below vein stenosis. CNS damage was found at the same level or above and it makes sense.
I cant imagine how the BBB could be breached below the stenosis where no increased flow exists whatsoever.