CCSVI- just the facts, ma'am

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

CCSVI

Postby Kasuku » Thu Jul 23, 2009 9:30 am

Very interesting!

I would like to know if the cause(s) of the blockages are known. Is it due to the anatomy of the veins? due to deposits or build up of plaques? associated with cholesterol? blood clots?

Does exercise increase the risk of veinous back flow and MS relapses? What is the average age of the people with CCSVI? What do we know about the epidemiology of CCSVI (age, gender, clinical signs, etc.)?

K
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Re: CCSVI

Postby cheerleader » Thu Jul 23, 2009 2:01 pm

Kasuku wrote:Very interesting!

I would like to know if the cause(s) of the blockages are known. Is it due to the anatomy of the veins? due to deposits or build up of plaques? associated with cholesterol? blood clots?

Does exercise increase the risk of veinous back flow and MS relapses? What is the average age of the people with CCSVI? What do we know about the epidemiology of CCSVI (age, gender, clinical signs, etc.)?

K


Welcome, Kasuku...
the veins are closed down by "stenosis" (literally: a narrowing) looks like it may be a congenital defect made worse by aging. No plaques, blood clots, build up. Just narrow veins.

We do not know the effects of exercise yet in CCSVI, although cardiovascular exercise is recommended for endothelial health, and it seems logical that exercise would help keep veins open. But studies have not been done yet. The rest of the answers to your questions will come in time...studies are being conducted around the globe, and research presented Sept. 8th in Bologna.
Here's the website which will post the info:
http://www.fondazionehilarescere.org/eng/index.html

This is all very new -
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Why immune suppression works...

Postby radeck » Sat Aug 15, 2009 7:51 pm

I'm captivated by this...

Yet one question that I imagine you have thought about. E.g. recent results from a trial using Campath, a chemo drug that depletes T and B cells, have shown significant success in basically halting MS. Relapse rate went practically zero, no new lesions, patients had slight reduction in EDSS score (most likely because some were in remission and further relapses were prevented), and increase in brain volume. Of course there were significant side effects such as thyroid issues.

Furthermore, MS patients have indeed been found to have antibodies to myelin in their serum.

Now the question is, how does this fit into the CCSVI paradigm? Could it be that the reduction in drainage from the brain somehow leads to auto-immunity, e.g. because vessels break and myelin and other parts of the system like oligodendrocytes (cells that rebuild myelin) get exposed to blood/the immune system?

Sorry if this has been discussed before.
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Postby cheerleader » Sat Aug 15, 2009 8:49 pm

Hi Radeck-
Welcome. Yes, we have gone over this, but no worries. We know that after stroke, the immune system comes in to clean up the dead cells...yet ischemia is not considered an "auto-immune" disorder. We also know that the immune system is activated in chronic venous insufficiency lesions which form on the leg...yet that is seen as being secondary to the closed veins, reflux and leakage of plasmic particles into tissue, and not autoimmune. Sure, campath, revimmune or any immune ablating medicine will work in the CCSVI model, because the immune system is over-reacting to cellular death (aptosis) in the brain and spine. That's a fact. And it may halt damage for a bit...BUT, it seems like there's more to the story...or else autoimmune modulation would heal MS, and it doesn't. We've had one gal who did Revimmune go to Stanford, and she had two closed jugulars. We've had folks on tysabri, copaxone, ldn, you name it...and all have had stenosis.

The oglios cannot get in and clean up and rebuild myelin while the brain is under macrophage attack. It just won't happen. The CCSVI theory says that once the reflux is stopped, the BBB can heal, hypoxic injury can end, plasmic deposition of stuff like iron will stop, the immune system can back down, and remyelination will occur. Of course, this is still theory.

The one thing we know as fact from Zamboni's research is that CCSVI is found only in MS patients, and all tested so far have shown this anomaly.
Stay tuned....
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby gibbledygook » Sun Aug 16, 2009 4:02 am

I'd also like to point out that myelin reactive immune cells are widely dispersed in the control populatioss and is not just apparent in MS patients.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Re: CCSVI

Postby CureOrBust » Sun Aug 16, 2009 4:08 am

cheerleader wrote:...the veins are closed down by "stenosis" (literally: a narrowing) looks like it may be a congenital defect made worse by aging. No plaques, blood clots, build up. Just narrow veins.
Zamboni appears to have found more than stenosis.
From the paper presented at the Charing Cross conference:
Zamboni wrote:Membranous obstruction of the outlet of the azygous vein into the superior vena cava can be successfully managed by simple ballooon dilation. This procedure was performed in 38 out of 77 cases, and no recurrence was recorded at 1 year.
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Postby radeck » Sat Aug 22, 2009 9:55 am

Does "no recurrences" mean "no MS relapses here"? Or does it stand for "no more obstruction"?
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Re: CCSVI

Postby zap » Sat Aug 22, 2009 10:08 am

CureOrBust wrote:
cheerleader wrote:...the veins are closed down by "stenosis" (literally: a narrowing) looks like it may be a congenital defect made worse by aging. No plaques, blood clots, build up. Just narrow veins.
Zamboni appears to have found more than stenosis.
From the paper presented at the Charing Cross conference:
Zamboni wrote:Membranous obstruction of the outlet of the azygous vein into the superior vena cava can be successfully managed by simple ballooon dilation. This procedure was performed in 38 out of 77 cases, and no recurrence was recorded at 1 year.


Can somebody ask Dr. Dake about this maybe? It gives me pause ... also, wish I knew why Dake goes straight to stents and does not do the balloon thing first.
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Re: CCSVI

Postby IHateMS » Sat Aug 22, 2009 10:12 am

zap wrote:
CureOrBust wrote:
cheerleader wrote:...the veins are closed down by "stenosis" (literally: a narrowing) looks like it may be a congenital defect made worse by aging. No plaques, blood clots, build up. Just narrow veins.
Zamboni appears to have found more than stenosis.
From the paper presented at the Charing Cross conference:
Zamboni wrote:Membranous obstruction of the outlet of the azygous vein into the superior vena cava can be successfully managed by simple ballooon dilation. This procedure was performed in 38 out of 77 cases, and no recurrence was recorded at 1 year.


Can somebody ask Dr. Dake about this maybe? It gives me pause ... also, wish I knew why Dake goes straight to stents and does not do the balloon thing first.


This has always been a concern of mine.

EDIT: just read a post from cheer on another thread... I did not realize Dr Dake tried on Jeff and occlusion immediately closed after ballooning. I must have missed that info originally
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Postby Sharon » Sat Aug 22, 2009 11:00 am

Dr. D tried ballooning my veins--I remember one of the docs in the surgery suite saying, "well, that was a colossal failure". My left jugular immediately collapsed...it is in my written report...somewhere I mentioned this on the forum, but I do not have time to search for the post right now.
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Re: CCSVI- just the facts, ma'am

Postby ibex » Mon Aug 24, 2009 12:23 pm

Hi
cheerleader wrote:1000 patients and controls are being tested for it by Jacobs Neurological Institute in Buffalo.

Do you have some information about this test? Until now I haven't found anything.

Cheers,
ibex
Last edited by ibex on Tue Aug 25, 2009 12:46 pm, edited 3 times in total.
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Postby bestadmom » Mon Aug 24, 2009 7:03 pm

Hi Ibex,

I am taking part in the Jacobs Neuroligal CCSVI diagnostic study. It is ot being publicized. When I called to enroll, they told me 250 people were tested already. This was about 6 weeks ago. They said they are testing 1000 people. Dr. Guttman is overseeing the project, and she is working with Zamboni. She will be at the Bologna conference.

Michelle
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Postby MaggieMae » Tue Aug 25, 2009 5:35 am

Can't wait to hear what Cheer learns at the conference.
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Postby muse » Tue Sep 01, 2009 5:18 pm

Dear cheer
I would like to ask a favour. I’ve translated your brill first post of the “CCSVI, Just the facts, ma’am” thread into German.
Would you allow us to put your CCSVI-article in that transleted version (with the link to the original post!) on our website http://csvi-ms.net ?
It would be a great because people in Europe have just the same questions like you guys in the USA.
Thanks so much for all you have done in the past it’s just unbelievable & have a safe trip to Italy!!! :D
Best
Arne aka muse
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Postby cheerleader » Tue Sep 01, 2009 6:43 pm

muse wrote:Dear cheer
I would like to ask a favour. I’ve translated your brill first post of the “CCSVI, Just the facts, ma’am” thread into German.
Would you allow us to put your CCSVI-article in that transleted version (with the link to the original post!) on our website http://csvi-ms.net ?
It would be a great because people in Europe have just the same questions like you guys in the USA.
Thanks so much for all you have done in the past it’s just unbelievable & have a safe trip to Italy!!! :D
Best
Arne aka muse


Translate to your heart's content, Arne...
I've updated the facts, so it reflects what we know now. I'm sure we'll have more fun facts after Bologna :D
Looking forward to the adventure in Italia!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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