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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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cheerleader
PostPosted: Tue Apr 19, 2011 11:38 pm 
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Researchers have recently discovered a possible association between MS and CCSVI. CCSVI occurs when the flow of blood in the veins of the chest and neck is compromised. This causes less efficient draining of blood from the brain. It is proposed that insufficient venous blood flow, in turn, promotes development of brain dysfunction, especially in MS.

What are the symptoms or consequences of CCSVI?
Proposed consequences of CCSVI syndrome include intracranial hypoxia, delayed perfusion, reduced drainage of catabolites, increased transmural pressure, and iron deposits around the cerebral veins. Iron deposition as a cause of MS received support when a relation between venous pressure and iron depositions in MS patients was found in a neuroimaging study. CCSVI itself, regardless of MS presence, is known to cause mind impairment.


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cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
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CCSVI in MS


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griff
PostPosted: Tue Apr 19, 2011 11:54 pm 
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cheerleader wrote:
What are the symptoms or consequences of CCSVI?
Proposed consequences of CCSVI syndrome include intracranial hypoxia, delayed perfusion, reduced drainage of catabolites, increased transmural pressure, and iron deposits around the cerebral veins. Iron deposition as a cause of MS received support when a relation between venous pressure and iron depositions in MS patients was found in a neuroimaging study. CCSVI itself, regardless of MS presence, is known to cause mind impairment.


cheer[/quote]

Hi Cheer, these are all alleged consequences of CCSVI but not symptoms. I do not care if I have CCSVI but I have no symptoms and I live long this way. Zivadinov's study confirms this latter, as he found many with CCSVI have no MS, they are healthy individuals.
Neither neurologists, nor neuro surgeons whom I talked to could not confirm this hypothesis. As for mind impairment, their opinion should be valued.
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se1956
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PostPosted: Wed Apr 20, 2011 12:41 am 
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There is a huge lack of understanding statistical data - especially for risk factors.

There are millions of healthy smokers, so lung cancer is an alleged consequence of smoking.

Zivadinov's study confirms that there is a correlation between CCSVI and MS.
That is EXACTLY THE SAME situation as with the data for smoking and lung cancer.

Thinking CCSVI is an ON/OFF switch for MS is complete nonsense same with smoking for lung cancer.

These risk factors increase the probability of getting the disease significantly but the overall risk still is relatively low.

R.
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frodo
PostPosted: Wed Apr 20, 2011 1:09 am 
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CCSVI itself, regardless of MS presence, is known to cause mind impairment.


Wow. I like that sentence because it is mine!! they copied it from here:

http://www.ccsviclinic.com/index.php?title=Main_Page

Anyway, I am quite glad that they liked it.

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You can get a worldwide list of available sites for CCSVI at http://www.ccsviclinic.info
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Cece
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PostPosted: Wed Apr 20, 2011 6:43 am 
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frodo, that is cool!
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1eye
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PostPosted: Thu Apr 21, 2011 5:41 am 
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Hey, they can't take all the credit. My mind was impaired well before that. Well before. It was all done with this little decoder ring, in controlled doses.

But I get greedy with my supplies once we're airborne.

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griff
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PostPosted: Fri Apr 22, 2011 12:28 am 
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se1956 wrote:
There is a huge lack of understanding statistical data - especially for risk factors.

There are millions of healthy smokers, so lung cancer is an alleged consequence of smoking.

That is EXACTLY THE SAME situation as with the data for smoking and lung cancer.

Thinking CCSVI is an ON/OFF switch for MS is complete nonsense same with smoking for lung cancer.


In part, I agree. But... If I remember correctly, originally, Dr Zamboni hypotized that stenoses causes iron deposits and iron deposits weakens the BBB, the weakened BBB lets iron and T-cells into the brain that reulsts is MS. In his case every MS patients have CCSVI as well. Dr Zivadinov's study clearly indicates that there are many MS patients without CCSVI. So what causes MS in their case? Do they have a different illness? They might, but we still need to find the answer.


Quote:
Zivadinov's study confirms that there is a correlation between CCSVI and MS.


Yes, that is true, but he thinks it is rather a result than a cause of MS.
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cheerleader
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PostPosted: Fri Apr 22, 2011 9:25 am 
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This note was posted to alert people in Texas of a new testing and treating site, not to debate the merits of testing for CCSVI. Welcome to This Is MS, Griff. I'm sure you'll find many apropos threads upon which to spread your ideas....but this probably isn't it.

And to those in the longhorn state, one of the finest medical establishments in the US is taking venous occlusion of the extracerebral veins and the consequences of this very seriously. Baylor is a non-profit establishment, consistently on US News list of top hospitals.
http://www.baylorhealth.com/Pages/default-bhcs.aspx
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS


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Johnnymac
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PostPosted: Fri Apr 22, 2011 1:18 pm 
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I spoke with Dr Lin at Baylor yesterday regarding after care for Courtney. He seems like a really nice guy and I'm getting him and our Dr in NY in touch to consult.

I can't confirm how they are currently performing their diagnostics or overall experience level with CCSVI but its a great thing to see more and more doctors jump in to start testing and treating.
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Melfromma
PostPosted: Fri Apr 29, 2011 8:56 am 
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I am one of Dr. Dake's original CCSVI patients. I am also a faculty member at Baylor College of Medicine. I am trying to find out more information about the CCSVI program here. I will forward on any info I obtain.

Melissa
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Cece
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PostPosted: Fri Apr 29, 2011 10:04 am 
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Melfromma, welcome, I look forward to whatever you find out. It's excellent that such a highly respected college is delving into CCSVI.
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AlmostClever
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PostPosted: Fri Apr 29, 2011 12:10 pm 
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Johnnymac wrote:
I spoke with Dr Lin at Baylor yesterday regarding after care for Courtney. He seems like a really nice guy and I'm getting him and our Dr in NY in touch to consult.

I can't confirm how they are currently performing their diagnostics or overall experience level with CCSVI but its a great thing to see more and more doctors jump in to start testing and treating.
:wink:

My Dallas IR told me that Dr. Lin is a "very competent vascular surgeon". You will be in good hands!

I think it's great for some local CCSVI interest finally!

There is some sort of seminar at Baylor today. Maybe it is about CCSVI!

Cheers!

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Sharon
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PostPosted: Sat Apr 30, 2011 7:36 am 
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Mefromma -

Good to hear from you!...check your PM's

Sharon
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CRHInv
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PostPosted: Sat Apr 30, 2011 9:58 am 
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Yes! Mel, Please check your pm's!

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dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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