CCSVI as underlying cause

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

CCSVI as underlying cause

Postby sbr487 » Thu Nov 26, 2009 4:31 am


I am interested to know if any of you think that sometime in future CCSVI will treated as a disease by itself rather than being just a diagnosis support tool. For example, First diagnose MS then check for CCSVI and then treat it.
I am asking this question because there are lot of conditions which are similar to MS and the real cause is still not known. Today some proof is available to show that MS and CCSVI are related, but it is also possible that other demyelating conditions could also be due to CCSVI.

Your thoughts ...

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Postby sbr487 » Thu Nov 26, 2009 7:04 am

I am not sure if this is an answer (uses lot of medical jargon), but below is an extract from facebook (

The following Diseases have been linked to
Endothelial Dysfunction:
Heart Attack and Stroke
Multiple sclerosis
Rheumatory arthritis
Hypercoagulation of blood, thrombosis, clotting disorders
Renal Failure
Metabolic Syndrome- abdominal obesity, hypertension, insulin resistance
Sleep Apnea
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Postby jimmylegs » Thu Nov 26, 2009 7:51 am

i'm sure you will have noticed the strong emphasis on lifestyle in the note you found on facebook.

i think at some point in the future we will see subsets of what we now call RRMS, PPMS, and SPMS. it seems that each will be potentially associated with different venous blockage locations and or severities.

personally i think that some of these may be confirmed to be genetic, congenital in nature. i also think - and i believe ashton embry and many others may have similar ideas - that we will have to deal with a category that has no genetic or congenital explanation and that rather have been problems caused by lifestyle.

at this point in my personal case i know that my lifestyle pre-dx had caused neuropathy in the form of classic b12 deficiency spinal lesions (and many other things i would learn over time).

then i had an accident snowboarding without a helmet where i really cracked my head. the mri showed the neural foramen looking just fine, but i wasn't.

over the next week the sensation slowly disappeared from my body. docs said if it was a pinched nerve my deficits would have happened suddenly.

i suspect the pinched vein idea has some merit in explaining the progression taking place over a week after my crash.

we shall see, once we get some scans set up.

i have made a lot of progress by changing my diet and lifestyle significantly. my job is hiking. my diet is much more diverse than the vegan one i was on for 15 years prior to dx.

and i don't mess with my bloodwork to make it look good these days (i used to because i wanted to be able to justify being vegan.. would supplement b12 for a bit before getting blood drawn... the one time i did not do that my b12 level was undetectable)

so what i think could happen in the future, is that people will treat the underlying diet and lifestyle issues of developed countries - many effects of which are measurable in common blood tests - that have us collectively tending to develop the diseases listed by cheer in the note you have quoted.

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Postby mrhodes40 » Thu Nov 26, 2009 9:14 am

I think we'd have to be nuts to think there is no lifestyle issue in play here, all the way from food choices to ability to slow down and be at peace (stress=cortisol=sticky blood and leaky endothelium)

And I imagine that a lot of co factors can play into a good outcome vs a poorer one, even after surgery. Healthy lower fat diet etc has to be key. and especially for the progressed crowd, exercise and physical therapy.

Realistically, if you've got iron in the brain in different locations, wouldn't your body try to clean it up? And if it does that, does it still be a little reactive on some level? I think of this quite a bit and wonder how it relates to the quoted (Bologna notes) Zamboni idea that 18 months is the line after which the progressives saw a little bump....recognizing that so few were treated that such a comment is preliminary of course. But the progressives would be the ones with bigger iron loads.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you... This is my regimen thread Read my book published by McFarland Health topics
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Postby cheerleader » Thu Nov 26, 2009 10:13 am

Hi sbr...
yeah, that list is from my endothelial health paper I put up on the CCSVI in MS page on Facebook. And it does have lots of medicalese- but that's just because I've been hanging out on this site and learning from people like Jimmy and Marie :)

You betcha lifestyle is connected. Look at the work of Terry Wahls, Ashton Embry, Dr. Roy Swank...there is much to be done keeping the veins healthy and blood flowing. I saw in my hubby, you cannot completely open two congenitally closed jugular veins with lifestyle. He was on that endothelial program, eating well, exercising, and still couldn't stay awake. Upon getting the MRV of his jugular veins, we learned why. His stent procedure allowed the deoxygenated blood out of his brain. This treatment, combined with his continued lifestyle of the endo health program, will hopefully keep him relapse and progression free.

My guess is that Jimmy's veins are only slightly closed, and her lifestyle is keeping her healthy. She may be one of the lucky ones (the docs call "benign") because she is able to stay healthy with supplements, exercise and diet. I hope, for her- that this always remains true!! If anyone deserves it, she does.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
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Postby ozarkcanoer » Thu Nov 26, 2009 10:31 am

Diet and lifestyle are indeed part of a healthy life.

If nature were really fair, then all the nice old ladies puffing on their cigarettes would have been dead by now.

Nature vs nurture rears its head once again. I live a pretty good, active life. I don't go to any extremes (someone suggested maybe I cut out gluten ?). Yet I have MS. So if we have narrowed veins in our neck, maybe it is congenital but lifestyle delays the onset of MS. I was diagnosed in January 2008 when I was 61. I told my neuro that I couldn't have MS because I am too old !!! He just laughed and told me I am a "classic case" of MS. So the question is : Was my diagnosis (40 small lesions) delayed because of good lifestyle choices ? Or is it just good luck ?

One other thought. My mother and father were both chain smokers. Maybe that contributed to my development in the womb.
Last edited by ozarkcanoer on Thu Nov 26, 2009 11:44 am, edited 1 time in total.
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Postby lyndacarol » Thu Nov 26, 2009 11:35 am

ozarkcanoer--You wrote:
But remember Atkins and the Atkins diet ?? He died young from heart disease.

But I thought I remembered that Dr. Atkins had died after he slipped on the ice and whacked his head.
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Postby ozarkcanoer » Thu Nov 26, 2009 11:43 am

lyndacarol... you are SO right and I am SO wrong . From Wikipedia :

On April 8, 2003, at age 72, a day after a major snowstorm in New York, Atkins slipped on ice while walking to work, hitting his head and causing bleeding around his brain. He lost consciousness and went into a coma on the way to the hospital. He spent nine days in intensive care, before dying of his injuries on April 17, 2003.

:oops: ozark :oops: (embarrassed again)
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Postby zap » Thu Nov 26, 2009 11:56 am

Well ... it's ambiguous really:
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Postby sbr487 » Thu Nov 26, 2009 11:49 pm

I think one more point that comes to mind ...

So far a faulty immune has been suspected to be the primary cause for MS (and similar diseases). If CCSVI happens to be true, it was really the immune system that was doing its job by cleaning up the unwanted deposits in brain. Of course, that at the cost of some painful side effects.
Who knows if that had not happened, there would be more severe issues to face ... Nature is supreme and does really care ...

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Postby Algis » Fri Nov 27, 2009 12:06 am

It makes more sense to me than an immune system that just turn berzerk :roll:
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Postby canadiankat » Fri Nov 27, 2009 1:32 pm

My Husband just had a Doppler test and they found bothing. He was told to get an MRV as that is more detailed... His sympton is really only gait right now. Was diagnosed in Feb 2009....
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