CCSVI one year later

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

CCSVI one year later

Postby cheerleader » Sun Feb 21, 2010 10:33 am

From Dr. Cooke, endothelial researcher at Stanford University- the doctor I sent my endothelial health for MS program- who put me in touch with Dr. Dake. We've been discussing the progressive nature of MS, how Jacobs found that in more progressed MS, CCSVI is more severe. This is still theory, because the Stanford group is just beginning animal models of CCSVI, but I thought this was a good observation from Dr. Cooke-

This observation of Rindfleisch anticipated the recent discovery by Zamboni at the University of Ferrara, and Dake at Stanford University- that there are anomalies of the veins draining the head and neck. It seems possible that the alteration in venous hemodynamics may induce alterations in the smaller tributaries (which will be "engorged with blood" as described by Rindfleisch). The change in flow and pressure experienced by these small veins may induce changes in the endothelial expression of adhesion molecules and chemokines that would promote inflammation, and perhaps favor the development of MS, if not cause it directly.


Indeed, Dr. Zamboni's research shows how this process occurs in chronic venous disease in other parts of the body, but understanding the affects in the CNS will be the new goal.

From Dr. Simka-
Moreover, under normal conditions, cerebral endothelium expresses only low levels of adhesion molecules. Consequently, immune cells very infrequently adhere to endotheliocytes and transmigrate across the blood-brain barrier. It has not yet been studied before if the pathological venous flow could increase the expression of adhesion molecules by cerebral and spinal endotheliocytes. Yet, it is possible that such an abnormal flow, in analogy with the case of varicose veins and venous ulcers, could trigger overexpression of these adhesion molecules. In turn, an increased expression of adhesion molecules, ICAM-1 in particular, could lead to the further increased permeability of the blood-brain barrier. In these settings, monocytes could transmigrate across the blood-brain barrier, transform into dendritic cells, and initiate an autoimmune attack against nervous tissue.


I hope that this board remains- as it began- a place to post research and discuss new papers and share pertinent information.

His is a post from Shayk with three new papers relating to CCSVI-
http://www.thisisms.com/ftopic-7708-30.html (the hypoperfusion thread is a classic)

The mechanism of CCSVI is still only theory (although fact in other parts of the body)...and there will be thousands of new papers coming out in the months and years ahead. Jeff had his jugular veins repaired because our doctor told us his impaired venous drainage was bad for his brain. We'll report back at his one year check up to see how this repair has affected his MS. So far, all looks good- no relapses, no progression, much less MS fatigue.

take care,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby ozarkcanoer » Sun Feb 21, 2010 10:58 am

Welcome back, cheer. A very thoughtful post as usual. Thanks for the information on Dr Cooke. I am very anxiously waiting to see if he is able to induce MS in mice (that is what he is using, right ?), by forcing them to have CCSVI. If he can then that will be huge. When I mentioned this possibility to a professor friend of mine he suddenly became intensely interested.

BTW, I had an appointment with a professor and neuroradiologist at the Washington University School of Medicine on Feb 8th. He advised me to go to Buffalo for diagnostic testing and to cancel my MRV here in St Louis. So I am waiting impatiently for BNAC to respond to my application. Also he, a neuroradiologist colleague, and a well-known MS doctor have applied for one of the NMSS CCSVI grants !!

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Postby cheerleader » Sun Feb 21, 2010 12:39 pm

thank you, Jill. I hope you get some answers at BNAC. I know you've been working so hard to get a scan of your veins.

More and more research will be completed at different locations- and I know it's not happening quickly enough, but it's only been a year since Dr. Dake agreed to look at Jeff. The internet has helped put pressure on researchers, and many doctors understand the immediacy of the effort.

Hang in there, everyone. Live a heart healthy and vein healthy life- follow heart attack/stroke guidelines for diet, exercise and lifestyle. Check out the endothelial health program for more info.
http://www.facebook.com/note.php?note_id=123456602210
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby pegmegrund » Sun Feb 21, 2010 2:03 pm

Joan,

I don't post much but have been lurking here on a daily basis since November of last year.

I'm sorry for your loss. Welcome back. We've missed you! I'm glad to hear the Jeff is continuing to do well.

Your ability to find and explain the research is so important on this site. I look forward to more of your explanations and analysis!

Thanks-
Pam
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Postby costumenastional » Mon Feb 22, 2010 1:01 am

Welcome back Joan.

As long we have you here this forum can only get better.

Sad it is, but it is early days and the answers we all need are not to be given easy. That is why your info are so valuable.

If time was on our side we could all sit back and wait for the research to unravel. But this is not the case and all of us are trying to be proactive.
I am to go to Sofia and to be honest i am so afraid they wont be able to diagnose CCSVI, that i may reconsider. After all, its not a freebie and with this kind of money i could travel to Buffalo instead.
The point i am trying to make is that confusion is at its best here and an as much as possible clear mind is needed.

I know Jeff will only get better and better and we will be here for the years to come chating for the days we used to have MS.
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a good summary of where we stand now

Postby christophelux » Mon Feb 22, 2010 2:53 am

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Postby prairiegirl » Mon Feb 22, 2010 11:23 am

Great to see that you are back Joan. My sincere condolence on the loss of your dad. I am a long time reader/learner here, but obviously have not posted much! I just want to relay how much your ongoing effort to inform and contribute new findings is appreciated-- thanks so much!!
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