money shots - this is CCSVI

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

Postby ErikaSlovakia » Sat Mar 27, 2010 11:17 pm

Johnson wrote: ... Erika - I hope that you can feel better in time. I am certainly glad that you are not feeling worse from MS. Do you know what was causing the pain behind your eye? Did you have that pain before your liberation? At least it is gone now.

Take care of yourself.

Good question. I had an optic neuritis couple of times. I had my first problems with vision in 2001 but it was not bad. It started to be a real problem in 2004. My both eye nerves are demaged. Left is much more. It was often painful even I was not having real optic neuritis.
My left eye is also focusing slowlier than the right - so I still have balance problems but it is not as bad as before the procedure. My vision is not better yet but at least I do not have the crazy pain behind my left eye.
I still have cruel pain in my right arm. I do not know if it comes from brain or from my C spine. Gabapentin + Carbamazepin makes me drunk, tired and weak but not all the day - especially in the morning until 1 pm.
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby Nunzio » Sun Mar 28, 2010 2:36 am

Hi J,
great picture but do you have any shots of the Azygous vein?
Just curious
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Postby babiezuique » Sun Mar 28, 2010 8:21 am

I Johnson! I'm so thrill for you and your Jugular that are so... what we all want our to be : ''so thin'', you seem to be ready to be a ''liberati'' ! May be the IR are going to moove and you will be able to get treated here in canada? I am waiting for an apointement with one in montreal... We have to concentrate in '' i have important vascualr issues and i want it to be adress my contry!''

I'M with you in this battle.... Try to find email adress of IR in your place ( this is what i did...) may be you get one who is interested!

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Postby drsclafani » Sun Mar 28, 2010 11:33 am

On Wednesday, I went to False Creek SC for Doppler US with Dr. Cooperberg, who is skeptical of Zamboni, Simka, et al. But he did find a narrowing in both IJVs, turbulence in both, weird valves in the right IJV, and found it rather odd that neither of my IJVs collapsed when I was upright (VVs are fine). I postulated that there was a blockage below his scan, which prevented the IJVs from draining whilst his transducer was in place. It occurred to me that the stenosis would have to be significant to prevent the IJVs from collapsing immediately...

Today, I went for the MRV. Like all of you who have been screened, I was worried that it was not CCSVI that causes my neurological problems, and that it might be something more nebulous, and not so simple to treat.

Here are the "money shots" (they cost $1851!). Nothing nebulous, but I sure hope that it will be "simple" to treat. I have a feeling that I am looking at stents required, perhaps more than one - especially on the right. I am calling that stenosis on the right a "Penny Whistle Stenosis"(TM).

Hey! Even a penny whistle costs money!

The Money Shots;

Those narrowings do not need stents. they are physiological narrowings resulting from low flow down the vein caused by the real narrowing that is causing the problem and that is not visualized by MRV!
I do not think that stents need to be put there!

careful what you ask for
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Postby Johnson » Sun Mar 28, 2010 11:06 pm

Erika - I can only hope that you continue to improve. You are a Poland pioneer, and I really appreciate you offering so much support and kind words to us all. I think that you are an angel!

Nunzio - the azygous shots are on the way, and the US shots.

Babiezique - Mérci beaucoups! Oui, c'ést vrai. J'ai le droit, vous avéz le droit, pour la traitement ici en nos pais. Je ne dorme pas, avant la traitement pour les touts.

(French-English translation courtesy of Johnson) Thank You! I have the right, you have the right, to have treatment here in our country. I will not sleep before everyone has treatment. (Of course, my French is not a lot better than my Polish...)

Dr. Sclafani - thanks so much for looking at my pics, and commenting. It is a great relief that you say that those jugular narrowings do not need stents. But, where might the "root" problem lie? As best as I can tell, the most distal constrictions (of my IJVs) are sub-clavian, then we are into the Superior Vena Cava, no?

I did see an oddity in my azygos (to my layman's eye) - could that have an effect on global flow (and the IJVs)? Beyond that, could valvular issues in the heart (right ventricle?) have an effect on flow in the IJVs? I recognize that I am running madly off in all directions, and I do not expect a diagnosis on the Internet - I am just trying to broaden the discussion.

PS - I certainly hope against the need for stents, and will never ask for them!
My name is not really Johnson. MSed up since 1993
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