This Is MS Multiple Sclerosis Community: Knowledge & Support

Other sequellae...I am curious...I would have guessed that acquired CCSVI would have resulted in m.s.-like symptoms.

(I am sorry, I will hold off for a bit, so that I don't flood the thread with comments on older posts like this...I had no internet for 14 days, it is good to be back!!)

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

I am reposting this because thanks to "not really Johnson" now I know how to post picture directly.
Let me see if I am now an expert in Color doppler analysis.
Keep in mind that my right jugular vein is stenotic from lack of flow from the brain. The left Jugular vein in the picture, in sitting up position, is enlarged and the only correct flow is the sliver of blue seen in the picture above. Even more telling is the spectral analysis which shows waves above the zero line almost as much as below the line. No change in the supine position in size or flow.
My diagnose is: severe reflux in the only functional jugular vein.
Thanks Dr. Sclafani for your expert opinion and for giving us your valuable time.

Hi dr Sclafani. Your work is highly appreciated. In the Netherlands your thread is spelled by several key users of our forums and duplicated on ours. So, please keep up the good work. People like you give us hope that openings for CCSVI will be found in the (near) future.

Anyway, I want to ask you if you can say something in general or in particular about the findings of my 'narrowing'.

The MRI pictures showed that I have narrowing in or very nearby the foramen (that is opening in the base of the skull where the IJ pass through; the explanation is not for you dr. Sclafani ).
The dr. who has examined the pictures said that it is unlikely that the foramen left is different from the right one (which IJ did not show any narrowing). So, the foramen is not pinching the IJ there, the narrowing is 'coincidental' in or nearby the foramen, is his belief. The MRi-scan did not show any bones.

I was wondering if this can be extra challenging because the length of the balloon for dilatation (the ones I have seen) are quite longer the actual narrowing actually is. So the balloon in this case will probably enter the brain (I presume I still have some). Or can this be avoided or can the balloon exactly positioned so that this will cause no harm, or ..?

What is your opinion or experience with this one?

Hi Dr, thanks for letting us know how your progressing. It's good to hear that things are happening, from where I sit there are times when things are at a stand still.
I watched this Youtube video and it set me spinning and I would very much appreciate your point of view. http://www.youtube.com/watch?v=iTv0ryxuiTA.
The comment from the Vascular person was that jugulars can be removed and there is no problem for the patient? This seems to go against the flow of what we are being told about CCSVI!
Can you please clarify what is being said or not being said!!!!!
Thanks in advance.

ok, in case anyone else like me had to google these words:

diapedesis: di·a·pe·de·sis/ (di″ah-pĕ-de´sis) the outward passage of blood cells through intact vessel walls

luxury perfusion: abnormally increased flow of blood to an area of the brain, leading to swelling.

vicarious: 2. occurring at an abnormal site.

venule: any of the small vessels that collect blood from the capillary plexuses and join to form veins.

(taken from http://medical-dictionary.thefreedictionary.com/)

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

The paper is called:

P. Zamboni, A. Cossu, L. Carpanese, G. Simonetti, G. Massarelli, A. Liboni: "The so called primary venous aneurysms", Phlebology 1990, 5:45-50

I haven't been able to track it down though.

i try so hard to keep this to the level that is understandable. Sometimes I get excited and assume that everyone is like me and can understand me.

cece, thanks for bringing this lesson back to me

but common, admit it, vicarious luxuriant perfusion does have a ring to it, doesnt it?

Why would blood thinners be needed because of treatment?
Did Dr. Zamboni ever use them? I don't recall this.

SofiaK, he addressed this awhile back...it's because of the risk of thrombosis or clotting after the angioplasty...one of DrS's first liberations came out perfect initially but then had a clotting complication...after that he added in the blood thinner regimen, it's been common to all the doctors doing this...hope to help and hope I've gotten my facts this straight!

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

The IRs in new york city have monthly meetings. I have shared my experience about ccsvi with them twice. once when everyone looked like they were staring at a wall. the other when they asked interesting questions.

i have invited dr sinan to share his experiences in kuwait with us in july. we are thinking of putting on a minisymposiumwhile he is at downstate/kings county. that would be agood way to get some of the IRs and maybe even a neurologist or two more informed.

but actually when we talk on the phone we talk about the weather, the Yankees and the hot nurse on 4 West

nunzio, you have taken best of class honors.

jb
christopher columbus was an italian, if i might brag a bit......

the neuros say that there are other diseases that also lead to iron deposition. zivadinov might need to prove it with another population

perhaps one needs to bathe the brain with luxiriant flow over a very long time in order to get symptoms of ms