diagnosed - MRV images added, page 5&6!

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

Postby prairiegirl » Fri Nov 05, 2010 8:29 am

Exciting times-- wish you all the best as you pursue your treatment options!
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Postby Johnson » Fri Nov 05, 2010 10:26 am

Good for you, Cece. It's a wonder you had the time to be scanned with all your administrative activities here. Grin

I want to see-see your pictures... Please?
My name is not really Johnson. MSed up since 1993
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Thank you, Cece

Postby MS_HOPE » Fri Nov 05, 2010 10:47 am

Cece, I'm so glad your Doppler confirmed what you already knew in your heart and mind -- that very probably underlying your MS diagnosis was an undiagnosed condition of messed-up veins. I'm so sure of this for myself that I'm not going to even be pre-tested, to save expenses. I'll be tested on the day of the angioplasty procedure, if I can be. (I believe with Dr. Siskin this is possible.)

I have great gratitude for your presence, intelligence, reason, temperament, humor and guiding words here on TIMS, Cece.

Wishing you the very best as you head towards treatment, always with an open and inquiring mind to utilize the latest information as it evolves.

Many thanks.
CCSVI:  Making Sense of MS
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Postby esta » Fri Nov 05, 2010 11:20 am

go cece go
you'll know when its right. some of us are risk takers, some of us have to know every little thing first.
in the end all the answers will be there...you have the time to wait, some of us don't, i almost think thats the differemce at this point
congrats and cece your balance and knowledge is so wonderful on ths forum, thank you.
PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia
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Postby Cece » Fri Nov 05, 2010 4:06 pm

If you all inflate my head (with the compliments), it won't be able to drain, I have this wonky valve y'know.... :D

My dear husband picked up the images for me today, so as soon as I figure out how, I will attempt to share.

MS_HOPE, yes, I believe if you are traveling in that Dr. Siskin goes straight to the procedure, no ultrasound or testing necessary beforehand. Like you, I knew I would have it, but there is in-the-head knowing and in-the-heart knowing, and I was nervous.

Here is the conclusion from the report:
Impression: Bilateral internal jugular vein reflux with incompetent valves. Left valve leaflet which is immobile. Right valve leaflets did not oppose one another.
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Postby Cece » Fri Nov 05, 2010 6:39 pm

I am also now googling valve leaflets, let me share here what I am finding:

drsclafani wrote:
Could ballooning solve valve problems?


The valves are leaflets of tissue that are attached to the wall and close periodically by coming together. in ccsvi Some of the valves are thickened mounds of tissue that do not open and close at all, some just do not open all the way, some do not close all the way, some seem to have the leaflets fused partially or completely. , some form pockets adjacent to the lumen and balloon up some times. In all situations they restrict the flow of blood coming out of the neck and brain.

Angioplasty attempts to tear the valve's attachment to the wall or split apart any fusion of the leaflets, or stretch wall adjacent to it. So it is not one question, one problem, or one solution. I do see improved flow, but we will have to wait to understand the natural history of the treatments.

We have a long way to go to understand these problems and determine the best way of treating the various problems. Bottom line, stay tuned. and keep asking the good questions.

Does that help you?

drsclafani wrote:The valves can have many different abnormalities.
1. they can have their leaflets fused, thickened, stiff
2. They can be misplaced, misoriented, misdirected
3. They can be incomplete and result in septae, duplications, webs

perhaps you can sense, that i think there is no one size fits all solution, nor do i think that all these abnormalities will have a single feature, outcome, result of treatment

Some surely will require some form of device to hold them open, such as a stent. Some will require surgery

in truth, we just do not know yet. We have not even had one research paper focused on the valve issues. We do not have proper equipment

My experiences with IVUS showed me that many of the narrowings are really valvular problems. These particular problems seemed to dilate well after cutting balloons. The fused valve leaflets just tear open. other valve problems just do not go away with angioplasty.

sorry about the answer, but we will solve these questions
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Postby Cece » Fri Nov 05, 2010 7:00 pm

Our good ol' venous valve animation. I found this helpful in understanding these valves, months ago when I first saw this. Please note that the flow in our jugulars is from top going down and this is an animation with the flow going from bottom up:

http://tinyurl.com/2b5rvtc

Also thought I should clarify that the above quote is an older one, it predates both drsclafani taking a stance against the use of stents and the introduction of the very large balloon sizes (18 mm) that seem to make angioplasty more effective.
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Postby bestadmom » Sat Nov 06, 2010 2:46 pm

Welcome to the club Cece, Next stop is the vip room, where percutaneous endovasccular treatments are performed, so you can dance the night away!
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Postby pklittle » Sat Nov 06, 2010 4:16 pm

Best of luck Cece! I know whenever/wherever you decide to be treated, I know it will be after a well thought out decision process.

I would not have a clear conscience if I did not add this thought though. Going through what I am now, I would advise you to wait a bit since your EDSS is 0 - .5.

That being said, i am glad you finally know! High five!
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Postby burg » Sat Nov 06, 2010 5:17 pm

Hi Cece;

Was away a few days and came back to hear great news!

CONGRATULATIONS!!! I'm so happy for you!!!

Now I can say what we weren't able to say about MS for so long...

Cece...GET YOURSELF FIXED!!!!!!!!!!!

My sincere wish for you is a complete recovery!!!! :D
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Postby HappyPoet » Sun Nov 07, 2010 9:13 am

.
CONGRATULATIONS
.
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Postby newlywed4ever » Sun Nov 07, 2010 7:01 pm

This bears repeating - CONGRATS!! My thought is for you to wait for our hero ;)
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Postby Cece » Sun Nov 07, 2010 7:24 pm

newlywed4ever wrote:This bears repeating - CONGRATS!! My thought is for you to wait for our hero ;)

We have many heroes in our CCSVI doctors. :)

But yeah I'd like to go with Dr. Sclafani.

I'm still really happy, I think that along with the usual lack of oxygen has made me a bit punchdrunk this weekend.

Anyone have a link for how to post an image? I have fifty of them. 8O
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Postby nellie » Sun Nov 07, 2010 7:30 pm

Cece-check your pm.
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Postby newlywed4ever » Sun Nov 07, 2010 8:24 pm

Cece wrote:
newlywed4ever wrote:This bears repeating - CONGRATS!! My thought is for you to wait for our hero ;)

We have many heroes in our CCSVI doctors. :)


How true! And the more, the better...
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