CCSVI RESEARCH here

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

Postby mrhodes40 » Sat May 23, 2009 12:13 pm

Frankly Arcee there is no reason to get out front, all will be known in time.
Some of it pretty soon. I believe the announcement from Italy will help.
If anyone sees a link to it when it happens, please link it in this thread
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
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Postby mrhodes40 » Mon May 25, 2009 6:43 pm

May 25, new link added in the supportive section by Kidd, cortical lesions in MS..............
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
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Postby Frank » Wed Jun 03, 2009 2:18 pm

CCSVI research from the Vascular Diseases Center, University of Ferrara, Italy

Conclusion:
CDMS is strongly associated with CCSVI, a scenario that has not previously been described, characterised by abnormal venous haemodynamics determined by extracranial multiple venous strictures of unknown origin. The location of venous obstructions plays a key role in determining the clinical course of the disease.

PubMed Full Articlet

--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
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Postby mrhodes40 » Wed Jun 03, 2009 2:50 pm

Frank thanks!! that one is the main paper for us; it is in the second post of this sticky...along with all the other papers.
marie
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
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Postby CureOrBust » Mon Jun 08, 2009 6:02 am

Should this item be in the main post? It is a future event. XVIth WORLD MEETING OF THE INTERNATIONAL uni0n OF PHLEBOLOGY


http://www.uip2009.eu/UIPFinal.pdf Pg 12
09.45-11.00
Prince Pierre Chronic Cerebro - Spinal Venous Insufficiency (CCSVI)
Chairperson: P. Zamboni
P Zamboni: Chronic Cerebro - Spinal Venous Insufficiency (CCSVI):
a new vascular picture
M. Simka Poland: The link between venous and immune system
B. Weinstock Guttman: CCSVI and Multiple Sclerosis
R. Galeotti: Endovascular treatment of CCSVI: technique and results
F. Salvi: Endovascular treatment of CCSVI: clinical results on associated
multiple sclerosis


Have the materials from his first presentation in Charring Cross been released for sale yet?
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Postby peekaboo » Mon Jun 08, 2009 7:45 am

Good find Cure -

Sept can't get here any faster...presentations offer much hope especially stating results...
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Postby mrhodes40 » Mon Jul 13, 2009 8:37 am

Have the materials from his first presentation in Charring Cross been released for sale yet?
The presentation is going to be free on the website when they put it up. It is expensive.

I am not sure if we should include sympsium links on the research post because it is getting long, I am glad you have it here,
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 LR1234 » Mon Jul 13, 2009 9:04 am

I wonder what dr's were presented to at Charing X? I should contact a few of them as they might be more willing to help than some of the other English Dr's!
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Fund for people who need financial help to have venous trea

Postby Daisyduck » Thu Aug 20, 2009 9:27 pm

I do not have any experience in putting together a non-profit account to benefit people who need some help getting to Stanford, but the idea has been buzzing in my head awhile. I understand that many if not all of us who have had this disease awhile (30 years) are burned out financially, but Don and I would be willing to contribute something to such a fund if someone out there could put it together. I do not know if one has to file for a nonprofit status with the government, but whatever you know, would you share with me and tell me what you thinhk of the idea? Daisyduck
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Postby mrhodes40 » Sat Sep 12, 2009 8:27 am

All the research is constantly updated on the second post of page one. Go to page one and read the second post :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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ccsi research

Postby spiff » Thu Sep 17, 2009 9:09 am

I'm not sure it this is the correct forem, but what is going on with PPMS???
Has THIS BEEN FORGOTTEN???
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Postby mrhodes40 » Thu Sep 17, 2009 1:40 pm

spiff please read the second post on the first page and read the notes from the conference, there is some in there about PPMS, also read the link to the liberation results there is mention in there. We talk about it all the time on the forums.... 18 months post is about that subject specifcally but read the research pages first....marie
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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How soon can we get started?

Postby rettahb » Sun Sep 27, 2009 11:02 am

If I wanted to pursue getting radiology and then stents.Who would one call first? Interventional radiology at Stanford? Dr, Dake? Where in Buffalo NY? How would you suggest getting started?

I would have to fly out for any appointments. I have a place to stay and could stay an extended amount of time..... within reason.
Never believe that a few caring people can't change the world. For, indeed, that's all who ever have.
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Postby mrhodes40 » Sun Sep 27, 2009 11:33 am

Hi Rettahb, this thread is for research, you want to discuss this with others on the other threads. At the bottom click chronic cerebrospinal venous insufficiency then look for a thread that has a title that might answer that question............ :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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medications used for solving vascular problems?

Postby Inge67 » Tue Sep 29, 2009 4:38 am

Hello all,

I am new to the forum, and I don't know exactly where to put my question. It might even been asked before, but was difficult for me to find anything in this particuar topic.

I am from the Netherlands and following the news on CCSVI with great interest and enthousiasm. I sent a few articles to my neurologist to get his opinion on the matter. I am speaking to him next thursday October 1st.

I am not quite sure how he will react. If is is reluctant to follow the theory of Zamboni and reluctant to have any surgery done, I want to ask him what he thinks about medication to solve the specific vascular problems.

I don't know whether Dr. Zamboni or Dr. Drake or anyone else has stated an opinion on this before.

Is there anyone who can clarify?

Thanks and I will let you know the response I get from my neurologist.
Diagnoses with RRMS 2002, after initial attack in 1999. Used Rebif and Tysabri. Currently on Copaxone. Mostly walking & balance problems.
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