1/3 of all people have internal jugular valve incompetence

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

Postby Zeureka » Wed Jan 27, 2010 3:11 am

This is very interesting!

What's your views on s.o. having diagnosis via color-doppler of:

- a "pathologic valve" in the internal jugular but no reflux.
- only lower blood flow still in the good direction (of heart = blue color in the doppler, not red = reflux).
- but blood flow in the jugular obstructed by the valve (you can see tiny blue moving spots) and at another point no colour (= seems no blood flow at all), but no reflux?

Could that be seen as a borderline case of CCSVI :roll: ?

And what about that s.o. being me, with 10 years benign MS after optic neuritis as first relapse at age 24, 10 years later a few relapses, but currently having only very light MS symptoms?

I am still evaluating how serious my jugular venous problem is - fortunately next week have chance to speak to an angiologist venous specialist in Ferrara.

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Postby Leonard » Fri Jan 29, 2010 2:21 am

Dear Steffi, this is also how I started and probably many of us did. I had the first phenomenon on 14 years of age, some effects later on but with many years in between of generally good health (did not even know about MS). The diagnosis MS came only at 48 years of age, now almost 6 years ago. The first 3 years after diagnosis, things went back considerably. Then, I started with Swank/Jelinek and have been able to sort of stabilise things (I am not religious on all this but make a good effort, I can advice you all, see www.takingcontrolofmultiplesclerosis.org).

Last year I met with dr. Zamboni in Ferrara and he diagnosed me with CCSVI Pattern C (stenosis in both internal jugulars but still awaiting liberation). Zamboni has got a theory about this. My own interpretation of that goes a bit as follows: as the vascular system gets older, the veins become more rigid/less flexible, there is less compensation possible via the other veins, the refluxes get worse, the accumulation of deposits accelerates with increasing percolation into the BBB because of venous pressure and refluxes. With definitive MS as a consequence. Such course would make perfect sense to me.

When I had my tests done by dr. Zamboni, indeed he requested me to take a very deep breath and to hold it for some seconds. This fllows what was said here above by cheerleader: The flow direction in Dr. Zamboni's studies is measured in the respiratory pause between inspiration and expiration. This was done in both up-rigth and supine position. I saw the huge flux/reflux with my own eyes, in both internal jugulars and transmitted into the deep cerebral veins, very impressive. I am convinced that any doctor who has seen the procedure with his own eyes would be convinced.

It is with this procedure that Zamboni must have found the 100% positive correlation of CCSVI and MS (I have no doubt on this). The echo-Doppler, when used correctly, is such a very powerful instrument. As we know, Zaboni has been able to convince experts from 43 countries who decided -by unanimity!!- on CCSVI and its relation to MS. (see other thread)

In the meantime, an angio/phlebogram was made of my jugular veins in a local hospital. At first sight the outcome points to a quasi normal situation, except for one shaded area with clearly less contrast (>80% less) somewhere toward the beginning of the dominant left internal jugular which could imply a significant stenosis [I am not a doctor]. And the right jugular was clearly less than the left (less contrast as well). This makes that there is an interpretation possible that would reconcile the outcome of both diagnosis. That has to be the case as both tests were done by most renowned experts in their field with great professionalism and confidence.

What is said here for the angio/phlebography is probably also true for the MRV. Creating a valid combined picture from echo and angio/MRV is probably the real challenge for doctors. This is also how I understood the comments from Polish doctors (who do actual liberation) on the false results of (MRV based) investigations in Germany.

This shows a few things to me: the diagnosis of CCSVI is not so easy and requires the right skills and the right equipment. But then the echo-Doppler is a very very powerful instrument for diagnosis (Zamboni told me the same). The echo-Doppler is fast and non-incisive and a critical step in the diagnosis.

There is a lot of noise that shows up now with regard to diagnosis of CCSVI and the techniques to be used for it. Although I am not necessarily a fan of big conferences, some well prepared events on both sides of the Atlantic could help to keep the train on the right track.

For Steffi, I would be very interested to know what came out of your meeting in Ferrara.

Thanks a lot.
cheers.
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Postby Zeureka » Fri Jan 29, 2010 2:48 am

Cher/Beste Leonard !

Your experience is very interesting, thanks a lot!
And finally meet s.o. from Bxl !
I am living/working from Italy, but actually have my health insurance in Belgium. OK if we communicate by private message, since do not want to overload this thread with Belgian issues. Once we have exchanged some info we could also open a new topic "CCSVI in Belgium" on ThisisMS? What do you think? Would you participate? I think this forum in English is better, like this we avoid the flemish/french problem, although I know both languages...

Salut/Tot ziens

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Postby jimmylegs » Fri Jan 29, 2010 5:42 am

hi there, i am not certain of this, but i am relatively sure we will not see the TIMS CCSVI forum being subdivided into multiple sub-fora by country and topic..

i also am not certain we will ever see multiple CCSVI fora, such that under the forum index we would see titles like CCSVI general, CCSVI alternatives, CCSVI and this country, CCSVI and that country, CCSVI and this, CCSVI and that, CCSVI and the other, CCSVI and such and such related condition, etc etc etc, then followed by LDN, Antibiotics, you get the idea..

i could be wrong, but we shall see.

TICCSVI, anyone :?:
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Postby Leonard » Fri Jan 29, 2010 7:05 am

There are many national fora across the world; and many things are happening on facebook in national circles (language issue), bigger circles etc. TIMS will never replace that.
But already now, TIMS serves as an important focal point for all; this is simply the way it is. It is because the English language brings the world community together, because most dynamics is developed here because of the large "home market"; and I guess there also this issue of the very open culture and mind in America.
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Postby shye » Fri Jan 29, 2010 8:31 am

Leonard,
you say:
My own interpretation of that goes a bit as follows: as the vascular system gets older, the veins become more rigid/less flexible, there is less compensation possible via the other veins, the refluxes get worse, the accumulation of deposits accelerates with increasing percolation into the BBB because of venous pressure and refluxes. With definitive MS as a consequence. Such course would make perfect sense to me.


I have been coming to the same conclusions. If you notice, there are few children or teens yet diagnosed via CCSVI, and even within the MS community; it is not diagnosed usually until mid 20's at earliest, and I think the preponderance is older. So the aging process is a large part of MS I think.
I am thinking that for the majority of us, using chiropractor and osteopath to get the bone structure to where not impeding any veins, using diet and supplements to heal the BBB and vein and artery structures, using EDTA or other type chelation to slowly get rid of plaque and damage done by mineral deposits, using exercise re: oxygenation, and using Andrew Fletcher's Inclined Bed Therapy to keep all circulation at optimum will gradually heal the CCSVI--and in the rare case, liberation will be needed. But even with liberation, would need to practice the above to halt future re-stenosis.
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Postby ozarkcanoer » Fri Jan 29, 2010 10:51 am

I just want to put my 2 cents worth in about age and MS diagnosis. I was suspected to have MS when I was 60, in 2006, due to an MRI showing I have 40 some lesions and double vision. I didn't believe the doctor so I didn't have a lumbar puncture. So I waited and finally had the LP in Jan 2008... and to my surprise it was positive !!!! So maybe I have had good vein health until my age finally caused problems. I don't smoke or drink and I exercise and eat fairly healthy food.

When I was diagnosed I told my neuro : "I can't have MS because I am too old !!!!" What an idiot I was. Now I have fatigue and the headaches from Hades and insomnia. Gee I want to be 55 again and happy !!

I want to be liberated and get my life back.

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Postby Leonard » Sun Jan 31, 2010 1:47 pm

Shye, before my diagnosis, I eat it all, laughed about things like low fat, unsaturated fats, omega 3, you will get the picture. This episode in my life has toughed me a few very valuable lessons. Whatever happens in the future, I will continue to take good care of my veins.

I hope that in the not too distant future, indeed I can speak about the episode in my life that I had MS. I want to be liberated asap because even with low fat, healthy life style etc, the refluxes won't stop. And although the body has remarkable capabilities for recovery, they will only come to effect if the refluxes stop. I want the strength to come back in my legs, in my body. For that, the diet and healthy lifestyle just isn't enough. I hear from people who have been liberated that the strength does come back.

Ozarkcanoer, like you I have invested emotionally hugely in this thing. I had the Doppler done by Zamboni, saw the refluxes, there is not even a single grain of salt in my mind that doubts for one second the Zamboni theory. Then, I had the angio/phlebography done. The interpretation of these results in less clear, but the two can be reconciled. The challenge is to come to a good conclusion, which is not so simple as we can see from reports of patients who have been liberated on of the other threads here on this forum. But I trust that with time these things will be sorted out...
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