Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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mrhodes40
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Post by mrhodes40 »

Hi Radek :D

You are thinking this is another version of heart disease, as if a stenosis means heart disease and everything you think you know or heard of in relation to heat disease has something to do with this and it does not necessarily have anything to do with heart issues or stenosis in cardiac arteries.

In fact, stenosis in the femoral veins that cause venous ulcers in the foot are not related to heart disease either.

The only criteria for CCSVI is that there be something hindering the outflow of the venous blood from the head. It could be anything that might cause that hindrence, in my case it was that I was born with too little space where my jugulars go by my jaw line and my jugs were pinched almost completely closed. This situation is not impacted by blood pressure.

Another way a person can have a stenosis is a scar or some type of damage to a vein that makes it stenose....if you've had chemo and they put a central line in that can cause stenosis of the jugular.

It can have something pressing on it say a tumor or another artery or vein (may thurners is an artery pressing on a vein)

Drugs that lower blood pressure will not help this because they impact arterial pressure and have little to do with the veins and certainly do not impact stenoses at all.

Arteries are where we check blood pressure it really tells us nothing about veins. They are passive as the blood returns to the heart and we do not measure the pressure in them actually.

I hope that helps!
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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mose
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Post by mose »

radeck wrote:My own previous post made me wonder whether there might be a correlation between high blood pressure and CCSVI/MS. Shouldn't individuals with high blood pressure tendency be more likely to develop stenoses?

On the other side, if a correlation between hypertension and MS existed, I'm sure we'd all know about it. What, hence, is wrong in my thinking?
I believe the error is assuming the stenosis results from the same processes involved in artherosclerosis and that is not a safe assumption at this point. Stenosis is being seen by Zamboni and Dake and they are treating it in the hopes the normalized bloodflow and the elimination of reflux will positively impact MS disease symptoms and progression. Research in to the actual causes of the stenosis will came much later and only after CCSVI 'proves itself' as a safe and effective treatment option.

On a side note, I believe several cases so far appear to be the result of anomalies that must have been present at birth. Not 'narrowing' as much as gross deformity.
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Post by radeck »

Thank you mrhodes and mose for the clarifications. If only arteries are widened by those types of medications, as you say, wouldn't this even lead to an *increase* in pressure in veins?

In any event, I found it astonishing (though it is now slightly off-topic) how well Lisinopril workd in shifting the T cell populations from inflammatory to regulatory. Far more potent than e.g. Copaxone (at least in the animal models). I therefore wonder if those MS patients who are on this medication anyway because they happen to also have high blood pressure have far slower progression of the MS. The paper certainly suggests so.
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mrhodes40
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Post by mrhodes40 »

Mose, much more coherent than my effort!

Thanks
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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samish
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Chronic Cerebrospinal Venous Insufficiency (CCSVI)

Post by samish »

This is facinating. This may be out in left field but I looked up venous insufficiency and I found out hrse chestnut seeds help as does Pycnogenol. I wonder if it would have any effect on CCVI. Does anyone wonder why only women get cellutite?
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Post by cheerleader »

Welcome, samesh.
Horse chestnut is helpful in CVI in the legs, it helps maintain the strength of the veins which are dilated due to blockage. We do not know if it would be as useful in the jugular or azygos veins, since these veins have gravity going with them to get the blood back to the heart, whereas the leg veins do not. It appears the veins in CCSVI are stenosied, twisted, crimped or narrowed....and only ballooning or stenting will help. Women do indeed suffer from venous disease at higher rates than men.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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gibbledygook
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Post by gibbledygook »

I've extensively experimented with herbs and I wouldn't recommend horsechestnut as I suffered a relapse a few months ago after taking a moderate dose of it followed by more vasodilatory herbs. Horsechestnut is vasoconstrictive.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Two more questions about CCSVI...

Post by radeck »

There are two more things that I'm trying to understand in the context of CCSVI, and would appreciate if you guys have thoughts on it.

1) I was under the impression that RRMS and PPMS have quite similar presentations, i.e. it is hard to tell within the first months or even year whether a patient has RRMS or PPMS based on symptoms and MRI alone, but that there are subtle differences (PPMS patients e.g. have higher chance of having walking problems initially, RRMS patients higher chance of having optic neuritis, PPMS patients may have more subtle MRI presentation and less inflammatory lesions). However how does this fit into the CCDVI paradigm? If RRMS were caused by the jugular veins being stenosed and PPMS by the azygos veins, wouldn't we expect clearly different symptomatic in the two patient groups?


2) I've heard of a study by the US Army that compared serological measures in soldiers that had developed MS (many of them many years after they had left the army) to others. They found that antibodies to EBV had been raised significantly above the average in the patients later developing MS many years before they did so. I seem to recall the study was quite statistically significant, and it supported that there's an immunological origin of MS. I can't find the study/paper on this right now, so am being a little vague. But perhaps others remember?

Also, why is one relapsing-remittent, and the other progressive?

Thanks for discussing...
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Post by radeck »

gibbledygook wrote:I've extensively experimented with herbs and I wouldn't recommend horsechestnut as I suffered a relapse a few months ago after taking a moderate dose of it followed by more vasodilatory herbs. Horsechestnut is vasoconstrictive.
Thanks for sharing the experience. Could you explain more, i.e. do you believe that vasodilatory or vasoconstrictive herbs caused your relapse?

After I heard about CCSVI a few weeks ago I started taking a vein support (i.e. not necessarily constricting or dilating) formula by "now" foods containing Trunorin (prikly ash bark), horse chestnut, butcher's broom, grape seed extract, and rubin, and so far am doing fine on it.
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gibbledygook
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Post by gibbledygook »

Hi Radeck,

During 2008 and after consulting a very good Chinese herbal medicine practitioner I experimented with 2 different types of vasoactive herbs. They were what I would describe as either vasodilatory or vasoconstrictive. Vasodilatory herbs include salvia miltiorrhiza, ginkgo biloba, gotu kola, quercetin. Vasoconstrictive herbs include horsechestnut and butcher's broom. Both sets of herbs have their pros and cons. The vasodilatory herbs were great, at least initially, on my MS symptoms but in large dosages they were bad for me and I got very strange sensations around my neck, shoulders and brain on large quantities of ginkgo/salvia. The vasoconstrictive herbs were also great, initially, but after a while on moderate dosages I got brand new symptoms with a relapse. I suspect that with a CCSVI blockage that neither herb can really alter the problems of the vasculature. The veins in MS are distended around the stenosis. thus vasodilation is good for the stenosis but not the pre-existing distension. Vasoconstriction is good for the distension but worsens the stenosis.

Even when I took vast quantities of ginkgo/salvia I didn't suffer a major relapse but when I took only moderate quantities of horsechestnut I did. Everyone, of course, is different but I would definitely only use horsechestnut/butchers broom in conjunction with a dilator which, I belive, rutin is. Of course I was also taking several grams a day of each herb so the outcome was extreme but quite useful for my own understanding of the disease.

The good thing about horsechestnut is that it is effective in reducing the inflammatory/immune cell involvement that is a typical feature of both MS and venous insufficiency elsewhere in the body, for example the legs. In both types of venous insufficiency there is a substantial body of immune system involvement. In one research paper I came across in pubmed it was thought that immune system abnormalities precede the problems in the vein wall or valve. So varicose veins may also be autoimmune. But they are also operable!
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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GiCi
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Venous insufficiency

Post by GiCi »

Hi everybody,
From many of your messages posted on this topic it seems to me that there is still some confusion regarding the different mechanisms which are the cause of the venous deficiency in the leg and in the brain. Although the underlying cause is different, the end result is similar, i.e. ulcers in the legs, plaques in the brain.
In the legs the insufficient drainage of blood is caused by a weakness of the walls of the veins that dilate considerably (varicous veins) with consequent ineffective function of their valves. It is therefore reasonable the usage of any medicaments that may have a positive effect on the strengh of the vein walls.
In MS things are quite different as far as the underlying cause is concerned. The insufficent venous drainage of blood is caused by congenital maldevelopment of the main channels, i.e. the jugular and the azygos veins. These strictures are not sensitive to any medication: they are a mechanical problem that has to be dealt with with mechanical solutions. If your car stops because one valve does not work, would you try different fuels to make the car go again? You would take it to the mechanic to have the valve replaced.

I know it sounds too simple to be true, but Zamboni's work seems to point that way. We have an enourmous debt of gratitute towards him and his dedicated team.
GiCi
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Re: Venous insufficiency

Post by Lyon »

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Last edited by Lyon on Sat Nov 26, 2011 9:30 am, edited 1 time in total.
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mrhodes40
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Post by mrhodes40 »

Thanks for the clarification Gici. :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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Jamie
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Post by Jamie »

That's what I said!!!
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Post by Sharon »

Lyon - I'm not sure why you redlined GiCi's post with "might be". He was referring to the underlying cause of the venous blockage, not the underlying cause of MS -am I correct GiCi?

Sharon
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