CCSVI RESEARCH here

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

Postby cheerleader » Tue Sep 29, 2009 6:40 am

Hi Inge-
There are no medications that can fix a venous malformation like we are seeing in MS patients. The veins are literally crimped or collapsed. Only surgery can correct this.
This thread is for research only-please post questions by starting a new topic, or use the search function to see if your question has been answered before-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Medications?

Postby Inge67 » Tue Sep 29, 2009 7:08 am

Thank you Cheerleader. I knew that I was probably posting sonewhere wrong, but things are nee to me. Thank you for your prompt reply, this confirms what I thought. I will try to get my neuro on board and all the info you supplied hopefully helps. Thanks for all the thourough work!
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Postby mrhodes40 » Tue Sep 29, 2009 1:32 pm

I have to add for people who come to this page first---

PLEASE go to page one post #2 and read all the research on that constantly updated post .......... it is current all the time with the newest material posted right in it....... :wink:
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Postby CureOrBust » Mon Oct 05, 2009 4:43 am

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Postby ewizabeth » Mon Oct 05, 2009 10:19 pm

Maybe this will seem like a really dumb question, but, how do we know that this is going to help? I mean, having a stent put into an artery? This is supposed to affect inflammation in the brain and spine? Why are people having this done? Is there research to show that it works? If there is then that's great, but how do we know that this is going to help? Are there clinical trials that have shown this to be beneficial?
Take care, Ewizabeth Previously Avonex, Rebif & Copaxone RRMS ~Tysabri, 31 infusions, ended 9/09. Starting Copaxone 12/09, waiting for Cladribine to be approved in 2010.
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Postby MaggieMae » Tue Oct 06, 2009 4:33 am

Ewizabeth,

It is not the arteries. CCSVI deals with the veins. Start by reading the stickies. These questions have been asked and answered many times on this forum.
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Postby ewizabeth » Tue Oct 06, 2009 8:37 am

Thanks Maggie,

I did some reading and this really is interesting! I'm going to ask the MS neuro about it at the end of October and get his take on it. :)
Take care, Ewizabeth Previously Avonex, Rebif & Copaxone RRMS ~Tysabri, 31 infusions, ended 9/09. Starting Copaxone 12/09, waiting for Cladribine to be approved in 2010.
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Postby mrhodes40 » Sun Nov 22, 2009 9:37 am

Again for newbies, please go to page one of this thread and read post 2. That post has all the research links and they are constantly updated so you can read the currently available papers :D :D
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Sotiris » Sat Dec 19, 2009 11:50 am

The following paper is now free.
Anomalous venous blood flow and iron deposition in multiple sclerosis
Ajay Vikram Singh and Paolo Zamboni
html version: shortened URL
pdf version: shortened URL
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Postby mrhodes40 » Sat Dec 19, 2009 3:00 pm

Thanks! I updated the research post on the first page!! :D
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Sotiris » Mon Jan 04, 2010 8:20 am

P. Zamboni et al. 2009: The severity of CCSVI in patients with MS is related to altered Cerebrospinal Fluid dynamics. Functional Neurology, Vol. 24, No. 3, pp. 133-138.
After registration, the full paper is available free of charge (with a watermark about the copyright, i.e. "© CIC EDIZIONI INTERNAZIONALI")
Functional Neurology Login
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Haacke MR prot.

Postby thisisalex » Wed Jan 06, 2010 7:03 am

Hi

I looked for the Haacke protocol, and a direct google search on the site (search string was: "pdf site:ms-mri.com" came up with a really great stuff. It looks like it is the detailed description of the Haacke MR protocol with detailed notes, historical connections, even about the processing of the collected data...

shortened URL

sorry if this is only new for me, but i didnt read about this document before here on the forum...

Alex
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Postby SammyJo » Wed Jan 06, 2010 11:48 am

Thanks thisisalex, I haven't seen this more detailed prprpsal from Haacke.

Here is a post, that has links to the Haacke protocol, which are still on his server.

Where to get MRV protocol - http://www.thisisms.com/ftopict-9107.html

If all MS patients reuired this protocol be done as part of their annual MRI scan, we'd have an answer about how many MS patients have jugular stenosis.
RRMS '95 SPMS '02 | CCSVI 10/09 | Adult stem cells 2012 | http://www.patientsforstemcells.org/
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broken link

Postby taxi » Sun Jan 17, 2010 1:57 pm

hello! this is my first post so I would like to give my huge thanks and gratitude to to everyone here for what they've done. I'm here on behalf of my wife who was diagnosed with RRMS about 9 months ago (but has probably had it for about 5 years). I'll reserve my comments for later because I wanted simply to report a broken link in the research section.

the link is the big one "Zamboni presentation 2006 The big idea: iron dependant inflammation in venous disease an proposed parallels in MS" which points to http://www.physics.ubc.ca/~rauscher/labproject.pdf - unfortunately this links to a 404.

A quick google gives the following page:

http://jrsm.rsmjournals.com/cgi/content/full/99/11/589

As I never saw the original paper I'm not certain that this is the same thing, but it looks like a good alternative link since it's HTML with a PDF option.

thanks again to everyone!

cheers
mark
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Re: broken link

Postby NHE » Mon Jan 18, 2010 4:43 am

Hi Taxi,
Thanks for pointing out the broken link. I have fixed it.

NHE
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