NeuroTalk Support Groups - CCSVI-I can't help but think that there actually my be something to this!

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Multiple Sclerosis (https://www.neurotalk.org/multiple-sclerosis/)

- - CCSVI-I can't help but think that there actually my be something to this! (https://www.neurotalk.org/multiple-sclerosis/107595-ccsvi-cant-help-actually.html)

Trish, really good questions...makes me think that this might be more complex than having my neck veins expanded...
I was wondering, if you have blocked carotid arteries, would you also tend to have blocked jugulars?

Trish, I though your questions were good too. I have lesions in both my brain and spinal cord so I was also thinking that this answer seems too simple. Also people are often dx with MS at a fairly young age. It just seems to go against conventional wisdom that they would have these type of blockages at a young age. But I guess it is possible. I am definitley looking forward to hearing more about this treatment in the future.

Quote:

Originally Posted by tkrik (Post 592370)

Just throwing this out there for those of you who know more about this and have been keeping track of CCSVI.

In all that I have read so far, they talk about the blood brain barrier and stents to help unclog arteries/veins in the brain. But what about the spinal cord? I, like others on here, have t-spine lesions as well. Would Zamboni's theory hold true for spinal lesions? How would they stent the veins/arteries within the spinal cord?:eek::confused: I can't seem to find anything about CCSVI and spinal cord lesions.

Also, is it possible that these are 2 different diseases? That people who only have brain lesions actually have a vascular disease but those who have lesions in other places have something else? And, if CCSVI some type of a congenital condition, wouldn't it tend to run in families more often? Or, again, is CCSVI a different disease?

Why is it that MS has areas within the brain that it "likes"? (

So many questions. Sorry, just trying to get a better understanding. CCSVI truly makes sense in regards to the brain. In my mind, I liken it to a stroke.

Maybe it has to do with this part of the theory?

"...Zamboni found blockages not only in the veins in the neck directly beneath the brain -- the jugular veins --but in a central drainage vein, the azygos vein, which flushes blood down from the brain along the spine. Blockages here, he found were associated with the most severe form of MS, primary progressive, in which patients rapidly deteriorate. For this form of MS, there currently is no effective treatment..."

From the link Laura supplied, with thanks to her!

http://www.ctv.ca/servlet/ArticleNew...1121?s_name=W5

Some related info. Looking, non-invasive I think. A study looking for volunteers.

Michelle Andrews
Project Coordinator
Buffalo General Hospital
Buffalo Neuroimaging Analysis Center
100 High Street
Buffalo, NY 14203
CTEVD Study <ctevd@bnac.net> YI: I think this just looking in Bufflo.

Quote:

Originally Posted by kicker (Post 592564)

That's the group I got in touch with thus far... well, emailed (since it was Saturday they won't respond till next week).

Imagine THAT inbox.... :eek:

I too thought about spinal lesions, and it's a good question. Personally I think that the FACT there are blockages (which imo, doesn't matter as far as the age question is concerned) is a part of the bigger picture of the disease, BUT... I feel that the blockages COULD be the key to providing a better quality of life for many of us, and possibly stopping the process that's already existent.

It's entirely possible that once the blockage starts, it gets worse over time gradually, resulting in the disease process we've known in the brain, optic nerve and spinal chord for so long now.

If bad stuff's being left behind in the brain, as the program describes, due to the draining being restricted due to the narrowing, it's only logical that our immune system would POOF fly into action, and be confused possibly? .. leading to the attack on myelin.

Of course I'm completely hypothesizing but wow.. the more I think about this one...

Quote:

Originally Posted by tkrik (Post 592370)

I can't seem to find anything about CCSVI and spinal cord lesions.

The venous problem triggers the breach of the blood-brain barrier, therfore allowing immune cells into the CSF, where they cause damage, whether that be in the brain or the spinal cord. See this presentation by Dr. Simka: starting at slide 6 he shows how CCSVI could lead to breach of the BBB and the initiation of an autoimmune process.

Also check out this link which says:

Quote:

It has been hypothesized, moreover, that pathological refluxing venous flow in the cerebral and spinal veins might increase the expression of adhesion molecules by the cerebrovascular endothelium. This, in turn, could lead to the disruption of the blood-brain barrier, and in these settings an autoimmune attack against myelin-containing cells could be initiated.

I think I'll e-mail this to my Doc/PCP and see what he thinks. I'll call in the morning..:)

Maybe we should all have our jugular veins and the azygos veins checked for blockages, Huh???

Quote:

Originally Posted by tkrik (Post 592370)

In all that I have read so far, they talk about the blood brain barrier and stents to help unclog arteries/veins in the brain. But what about the spinal cord? I, like others on here, have t-spine lesions as well. Would Zamboni's theory hold true for spinal lesions? How would they stent the veins/arteries within the spinal cord?:eek::confused: I can't seem to find anything about CCSVI and spinal cord lesions.

Hi T,

This "story" actually goes back to the 70's, where a Dr Schelling made a discovery:

Quote:

The story began in 1973, at the University of Innsbruck, when F. Alfons Schelling, M.D. began investigations into the causes and consequences of the enormous individual differences in the widths of the venous outlets of the human skull. The results of this study appeared, in 1978, in the official organ of the German-speaking Anatomical Societies, the "Anatomischer Anzeiger".

F.A Schelling's 1981 discovery, at the Hospital for Nervous Diseases in Salzburg, of a striking widening of the main venous passageways through the skulls in victims of Multiple Sclerosis were to occupy the author's thoughts through the following decades of his quite diversified medical career. And in putting together, bit by bit, all the observations on the venous involvement in the emergence of the specific, and, in particular, cerebral lesions of multiple sclerosis, he was able to recognize their causes.

He has published an online "book" (where I got the above quote), that describes (on pg 88) how this "backjet" could affect the development of spinal cord lesions, but it is too complex for me to put in words (or even understand). If you read the entire book, he spends a great deal of time focusing on the spinal cord lesions discovered back in the mid-1800's (Charcot's time), and even rationalizes how viruses, autoimmune, etc. don't fit with the currently held theories about the disease process:

http://www.ms-info.net/ms_040504.pdf

He also has a great website where you can view how Dawson Fingers are formed:

http://www.ms-info.net/evo/msmanu/984.htm

I believe that this "backjet" influence the formation of our "multiple plaques" disease, absolutely, but still wonder what the underlying problem is that causes our veins to do this in the first place. As was explained in the W5 show, it seems as though twenty-some % had further vein complications after the angioplasty surgery ... so is something else causing this "mechanical failure", which results in multiple plaques in our CNS?

Anyway, it finally feel like they are on the right track to me ...

Cherie

If you want more info on this all - check out www.thisisms.com they have an entire board/forum dedicated to this and people who have done it. They do it at Stanford (in CA).

They also have extensive information regarding the treatment on that site.

~Keri

Thanks everyone for all the links and info. I read through some links and will be reading through the others. As many of you know, my brother spent 20+ years as a researcher for neurological disease - MS included. I plan on sharing this information with him and seeing what he thinks about it all. I am sure with all his work/books (and he has lots) he has heard of this but I am not sure.

Quote:

Originally Posted by lady_express_44 (Post 592622)

I believe that this "backjet" influence the formation of our "multiple plaques" disease, absolutely, but still wonder what the underlying problem is that causes our veins to do this in the first place. As was explained in the W5 show, it seems as though twenty-some % had further vein complications after the angioplasty surgery ... so is something else causing this "mechanical failure", which results in multiple plaques in our CNS?

Anyway, it finally feel like they are on the right track to me ...

Cherie

Thanks Cherie! You and I have a similar history in regards to the MS. Few (5) brain lesions but definite spinal lesions and I was thinking of you as well when I was wondering about those of us with more spinal lesions than brain.

The theory does make sense to me but I agree with you that the underlying problem is still a mystery. Something has to be causing and we are then back to the same questions - what caused this malfunction within our bodies. We are then back to the chicken and the egg question.

It would be interesting to see the results of anyone in the study that was directly related to an MS patient in the study. It is interesting that for some families MS appears to be "hereditary" while in other families there is no direct link to it being hereditary. Case in point, I am the only one in my family that had/has it for the past 4 generations. Others on here have other family members who have it as well. Again, are these 2 different types of MS? Is one CCSVI an inherited condition and the other is completely different?

I am very hopeful that this will be a start in a new direction for all of us MSers. Again, I think of this in terms of strokes or TIAs or brain injuries and the effects of such both short term and long term.