CCSVI is real, and IRs should treat it with venoplasty- Dake

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

CCSVI is real, and IRs should treat it with venoplasty- Dake

Postby Cece » Fri Jun 08, 2012 10:00 am

http://www.cirse.org/files/File/cirse20 ... un_web.pdf
easier to read here: https://www.facebook.com/notes/ccsvi-al ... 2522843116
Currently, the themes of a myriad of big picture questions concerning CCSVI can be consolidated into three important considerations:

1. Does treatment of CCSVI cure MS?

2. Does CCSVI have a fundamental role in causing MS?

3. Does endovascular therapy produce objectively measured patient benefits beyond a placebo effect?
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Re: CCSVI is real, and IRs should treat it with venoplasty-

Postby MarkW » Fri Jun 08, 2012 12:42 pm

Nice find Cece. My simple answers in contrast to Prof Dake's detail. ...............................MarkW

1. Does treatment of CCSVI cure MS? No, definitely not.
2. Does CCSVI have a fundamental role in causing MS? No, probably not.
3. Does endovascular therapy produce objectively measured patient benefits beyond a placebo effect? Yes, so use it safely, now.
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: CCSVI is real, and IRs should treat it with venoplasty-

Postby 1eye » Fri Jun 08, 2012 8:52 pm

More simple answers:

1. Does treatment of CCSVI cure MS? Depends on how far it has been allowed to progress. DMDs will not prevent disability. CCSVI treatment has been known to reverse it.

2. Does CCSVI have a fundamental role in causing MS? What is MS?

3. Does endovascular therapy produce objectively measurable patient benefits beyond a placebo effect? Yes. Especially, since placebo ''effect" is neither objectively measurable nor of any patient benefit. Its use is to cater to and appease medication-seekers.

Enough has been written about CCSVI and MS to sink the Bismarck.

Much of it is either flames or the complaints of the scorched. When can we stop talking and get to work?
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Re: CCSVI is real, and IRs should treat it with venoplasty-

Postby 1eye » Sat Jun 09, 2012 12:07 pm

It might be a good idea to read and respond to the opposing side of this debate, which is in the paper following Dr. Dake's.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
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Re: CCSVI is real, and IRs should treat it with venoplasty-

Postby Cece » Sat Jun 09, 2012 3:38 pm

Currently, the themes of a myriad of big picture questions concerning CCSVI can be consolidated into three important considerations:

1. Does treatment of CCSVI cure MS? It cures symptoms of CCSVI that had been mistakenly thought to be MS symptoms. And it may have a beneficial effect on MS disease course and on MS depending on the individual. Needs research.

2. Does CCSVI have a fundamental role in causing MS? Maybe. Needs research using gold standard venogram plus ivus to determine specificity/sensitivity of CCSVI in MS population compared to healthy controls. Noninvasive doppler is not the gold standard.

3. Does endovascular therapy produce objectively measured patient benefits beyond a placebo effect? Yes. Needs research.

When can we stop talking and get to work?

Needs funding. But I agree with you.
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Re: CCSVI is real, and IRs should treat it with venoplasty-

Postby msscooter » Mon Jun 11, 2012 10:27 am

This was from 2011 and is helpful to reflect on. I was at Dr Zivadinov's presentation to cardiology grand rounds at Stanford last week. The data is strong. Many neurological diseases are showing higher incidence of CCSVI (around 40-45%) over healthy controls. Drs. Cooke and Dake deserve our financial support!! Please give to the Falk Cardiovascular research center!!

As soon as he gets his IDE from the FDA he will begin his MS study. Hoping senator Harkin's bill survives in the house and becomes law soon! passed the senate with 96 votes!!. it should give FDA the authority they need to speed things up. You can help by sending a letter like this one: http://preview.tinyurl.com/73bsrnb

Dr's Dake and Zivadinov agreed that CCSVI is best thought of as a spectrum disorder, with MS being one of several "worst case senario" outcomes that are possible.

It is looking like MS is serving as the portal to CCSVI which is a huge problem leading to a long list of serious medical conditions. MS, PD, Altzheimer's, IBD, Migraine, POTS, and maybe 30 more!! MS patients can be proud of efforts by so many, but especially Joan and Marie, to push for research. Thanks also to the Annette Funicello Research Fund for honoring Dr Zivadinov on his visit to the Bay area with a brunch! he answered so many questions. BNAC has collected a treasure trove of data to be mined. DR Z also deserves support for his work at BNAC to start understanding the MStery.

Drs Dake and Zivadinov along with DR Zambonbi and Marie Rhodes are on the Annette Funiello science review board and are going to help move CCSVI research forward quickly and gain wide support!

All for one and one for all!

LaFemmeMSketeer

haven't needed a scooter since 2010 thanks to CCSVI Treatment!
Last edited by msscooter on Mon Jun 11, 2012 7:01 pm, edited 2 times in total.
I have been MSsooter but need to change my name after libration. Don't use a scooter anymore! I am LaFemmeMSketeer!
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Re: CCSVI is real, and IRs should treat it with venoplasty-

Postby Cece » Mon Jun 11, 2012 10:39 pm

A spectrum disorder! This is the first I've heard of that.
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Re: CCSVI is real, and IRs should treat it with venoplasty-

Postby cheerleader » Tue Jun 12, 2012 3:32 pm

Hi Scooter no more :)
Great to hear the CVI meeting at Stanford with Dr. Zivadinov went well! Yes, you're right---this essay by Dr. Dake was published last year, but I reran it on Facebook last week. Just like to counter the "crazy faith healing" comments from Dr. Rubin in Canada with some plain spoken American insight and FACTS! The doctors are Stanford are NOT letting go of the venous involvement in neurological disorders. It was great to reconnect with Dr. Cooke at the Hubbard conference in May. He's very committed to understanding CCSVI and the effect on the endothelium and brain. And Dr. Dake is ready to get that study going. He's had more hurdles put in front of him than an Olympic hurdler! But he's never given up, either. I love these guys.

Thanks for the comment on Marie and my efforts to push for research....we keep on pushing. There is a connection with the veins and brain health---the fact that we still only looked at arteries and brain health astounds me. We have a family member who was hospitalized for syncope...the techs easily scanned his arteries, no stenosis. But do they look at the veins? No. My wish is that someday, doppler scans of veins will elucidate the FULL picture of brain circulation and health. For my son's health, for all future generations. Many neurodegenerative diseases may be part of this--the only way forward is research.

thanks for the update!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: CCSVI is real, and IRs should treat it with venoplasty-

Postby msscooter » Tue Jun 12, 2012 7:48 pm

Thanks for the kind words, Cheer!
I'm so excited by the work Dr Zivadinov spoke of, and the plans at Stanford. We need to get these guys the $$ they need to do this work now!!

Oneye, you are right to point to Jim Reekers counter argument. This is a replay of their "gloves off" debate at the plennery session @SIR in March of 2011 in Chicago where he was even more "out there". So I read this one as a bit softer of a denunciation of CCSVI and his buddy, Mike Dake. Jim Reekers is one of the lions of the European IR community. He makes a point in his autobiographical statements about his life as an IR that he believes in doing things "The European way". I wonder what that means to him, but he mentioned it several times.... I think it is important in his own mind not to be a copycat. He is a good doctor and will come around once he can figure out how to make it "his" idea. He'll follow the science in the end. There was good news out of Amsterdam nonetheless recently.

(edited to delete emotional statements.)
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