Too Early to Promote CCSVI

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

Postby chrishasms » Fri Dec 04, 2009 5:18 pm

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Postby ozarkcanoer » Fri Dec 04, 2009 5:32 pm

Good thought Chris. So you think that even if the reflux is stopped by angioplasty the blood-brain barrier breech [(B**4), LOL] will still be open and iron is still there and the immune system is still active ? I wonder.....????? But RevImmune can't repair a damaged BBB !! It just resets the immune system right ??
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Postby Lyon » Fri Dec 04, 2009 5:32 pm

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Postby Johnson » Fri Dec 04, 2009 5:33 pm

prof8 - Interestingly, I have a venous angioma too, said to be a "congenital artifact". I was asked about history of head injury though, and I said, with a grin, that I 'couldn't remember. I have taken quite a few blows to the head though'. The neuro' recommended waiting for the "Gamma Knife" to deal with that (15 years ago).

I have just started to show signs of venous insufficiency in my right leg. from thigh to ankle, as well. Most of my major problems are on my right side, except the original optic neuritis, which was in my left eye. Right hemisphere is involved there though...

As I read the criteria for Dr. Haake's study, anyone with congenital defects in the veins of the brain would be excluded. I think that any kind of venous abnormality - such as thrombosis or phlebitis (same-same?) - was contra-indication for acceptance in the study.

Just a side note: I've been here less than a week, and have no intent to impose, but could you few people who are locked in peeing matches start a thread for your battles and keep it there? Please?
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Postby chrishasms » Fri Dec 04, 2009 5:36 pm

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Postby ozarkcanoer » Fri Dec 04, 2009 5:37 pm

Johnson... Maybe other venous problems could eliminate you from Dr Haacke's study, but maybe later you can get imaged and liberated along with the rest of us !!
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Postby chrishasms » Fri Dec 04, 2009 5:41 pm

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Postby Johnson » Fri Dec 04, 2009 5:46 pm

ozarkcanoer wrote:Johnson... Maybe other venous problems could eliminate you from Dr Haacke's study, but maybe later you can get imaged and liberated along with the rest of us !!


I can't wait for that. I'm off to see Dr. Simka in the New Year (scheduling next week - barring something going awry). If that does go sideways, I'm off to India for surgery.

I intend to live blog the whole thing.
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Postby chrishasms » Fri Dec 04, 2009 5:51 pm

Johnson read your PM
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Postby Lyon » Fri Dec 04, 2009 5:51 pm

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Postby ozarkcanoer » Fri Dec 04, 2009 6:06 pm

Chris... This just makes a lot of sense. BTW, have you seen the VERY POSITIVE statements on the Fondatione Hilarescere website yet ? I love that Dr Zamboni and his associates are ready and willing to declare openly and publicly with no science-speak, that MS and CCSVI are inexorably linked. There is no backing down for Dr Zamboni now, and I love him for it.

Hari Hari, Krishna Krishna, Hari Hari, Krishna Krishna
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Postby cheerleader » Fri Dec 04, 2009 6:16 pm

what the hey is going on around here? 8O

Ummm....I think it's too late to say it's to early to discuss CCSVI. It's out there. We've been talking about it on here for almost a year now. "Promotion" was never the intent. Getting more research funded, helping patients understand the research and general public information is what it's all about.

I never said cure, but I have said I believe CCSVI may be the cause. And that's why I'm working so hard-

cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby chrishasms » Fri Dec 04, 2009 6:21 pm

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Postby jr5646 » Fri Dec 04, 2009 8:02 pm

yonderboy wrote:jr5646


Thanks for your posts - both here and on the Tysabri forum - you've certainly voiced the hopes about CCVSI and concerns about waiting that many of us feel. I'm in the same boat as you as far as using Tysabri as a stop-gap measure, and wondering what to do next: I'm off Tysabri after 27 infusions, sort of an informal 'drug holiday'. In your last post you seem to be saying that you've run out of options. I'm curious about your opinion on shutting down the Tysabri, and trying to get Campath (after a drying out period). Has your neurologist discussed this with you? Any perspective would be helpful.

Thanks.


You're welcome, I'm not sure yet if my ramblings have any theraputic value !!! Most likely not haha

Yes, am I ever hopeful regarding ccsvi... I just got an e-mail today from Stanford.. They're working on a clinical trial (you probably already heard), which may require a longer wait, but probably the best for all involved.. Prob. alot less liability for them and I'm sure we'll literally have to sign our lives away to get in...well worth it, in my estimation. In the long run, the continued gathering of data, and possibly perfecting a procedure will be invaluable.

As far as TY goes, I need to correct my previous post... I've been on it since 10-2006 not 2007... My doc took me off after 26 infusions (2yrs) and sorta left me hanging (no treatment at all for 6 months) and my symptoms worsened fairly quickly. I liked the convenience of not having to go in for the infusions, but really started feeling like crap. The only consolation, was that TY appeared to be working, but didn't really realize until I stopped.. I guess a bunch of PT's complained, and the higher-up's got wind of it and gave him some crap about leaving us all hamging.. I practically begged to be put on anything, so he finally put me back on.. I really don't know which way to go treatment wise at this point... I could stay on TY and wait for the ccsvi clinical trial to start up and hope I don't get pml .. or look for something that could potentially benefit the vascular system, like Lisinopril? I think some are waiting 60 or more days washout before starting anything new.. mine wanted a year. Sorry I'm not much help to you, as I'm not sure which way to go either.. my neuro sucks so bad so I can't rely on his help... Campath is pretty powerful stuff too... :?
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Postby jay123 » Fri Dec 04, 2009 8:25 pm

stolen from the braintalk forum, but here's more anecdotal proof that we are on the right track - if meds like this help, it sure shows a blood flow problem-

http://www.eurekalert.org/pub_releases/ ... 081809.php
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