diagnosed - MRV images added, page 5&6!

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

Postby Cece » Sun Nov 07, 2010 8:27 pm

newlywed4ever wrote:
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...

but notice I did not have to ask which hero you meant.... :)
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Postby Cece » Mon Nov 15, 2010 7:48 am

I am leaving now to get a Haacke protocol MRV! An hour and forty minutes in the MRI tube. But at last I get my own images instead of only looking on at everyone else's. :D
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Postby Flashover81 » Mon Nov 15, 2010 7:57 am

Wishing you the best of luck, you deserve it. :D
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Postby Algis » Mon Nov 15, 2010 7:58 am

We'll be waiting Cece - Good :)
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Postby CCSVIhusband » Mon Nov 15, 2010 8:05 am

I hope you have easily fixable messed up veins ... (those are the best kind to get the placebo in). :lol:
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Postby HappyPoet » Mon Nov 15, 2010 9:58 am

Cece, this is wonderful news! I'm so happy for you!!

I strongly advocate that EVERYONE interested in CCSVI treatment get an MR-V. Without my MR-V, I would not know about the dural sinus malformations in my brain which will undoubtedly, negatively affect my CCSVI treatment outcome -- I know why I had/have/will have little symptom improvement.

For those who don't show improvement, an MR-V may give part of the reason -- I've read of other pw"MS"/CCSVI who also have dural sinus malformations; I don't think this condition is as rare as I was told it is.

I can't wait to hear your results!!!

:)
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Postby Cece » Mon Nov 15, 2010 2:41 pm

:D :D :D

Yes, I have CCSVI. I don't have the images yet or the report, just the mention by the technician after my MRV that they've now found CCSVI in every MRV they've done. He confirmed for me that, yes, I was included in that. I'll get my disk tomorrow.

:D :D :D

Smart point about the dural sinuses, HP.

They also imaged my azygous, using cardiac gating to measure my heart spikes so that they get the flow timing right (?). I am doubtful that they can successfully image the azygous yet, but happy that they'd even try.

Thanks, everyone, for the good wishes. A CCSVI diagnosis beats a MS diagnosis by a country mile.
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Postby HappyPoet » Mon Nov 15, 2010 5:24 pm

HappyPoet wrote:.
CONGRATULATIONS

DITTO!
.
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Postby Cece » Wed Nov 17, 2010 1:25 pm

Ok, I've got the MRV! And I am having trouble understanding the images. BUT there are a few graphs, in the flux section. My left jugular and right jugular both have reverse flow only in the slice taken. No forward flow whatsoever over the duration taken. The surprise is my azygous: first it has forward flow, than it crosses the zero down to reverse flow, then comes back up to forward flow. This is reflux, according to this:

www.ms-mri.com/docs/ms-report-interpret ... mh-9pm.pdf
Five graphs are shown including; total integrated flow per cardiac cycle, flow rates in
the form of total, positive and negative, and average speed coincide with the magnitude and
phase images. These allow us to determine if there are abnormal flow patterns such as no flow,
reverse or reflux flow, and circulatory flow patterns (often the case for widened bulbous lower
levels in the internal jugular veins). If the flow curves for a given vein fall through zero and
change direction, then we refer to this as reflux flow. However, on occasion the vessel shows
flow in both directions at any given time. This we refer to as circulatory flow.

So all three (left jugular, right jugular, and azygous) have abnormal flow patterns.
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Postby CCSVIhusband » Wed Nov 17, 2010 1:32 pm

and yet you only have 'mild' ms ... :wink:

you're a lucky one!


will you be doing a tracking thread?
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Postby burg » Wed Nov 17, 2010 4:11 pm

CONGRATULATIONS CECE !!!!!!!!!!!!!!!!!!
So happy for you.
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Postby Cece » Wed Nov 17, 2010 4:33 pm

burg wrote:CONGRATULATIONS CECE !!!!!!!!!!!!!!!!!!
So happy for you.

:D Thank you. It's two days later and I'm still wiped out from getting the MRV, plus the driving to and from, and my head has been a block of wood since Monday too, I'm waiting for that to clear. So it was not without sacrifice that I obtained this report. :D

Yes, I'll do a tracking thread, I am hopeful to have good things to write in it when the time comes. Most of my symptoms align with the things that seem to respond well to CCSVI venoplasty (severe fatigue, cogfog, vision clarity, weakness).

Maybe the equation is "Severity of CCSVI / how well the body compensates + time = MS" and my body has compensated well. Maybe also I don't know how to interpret any of the imaging, so can't really say if my CCSVI is severe or average or what exactly. But most likely there would have been my share of disability waiting in the future as a result of these blockages and the timing of this discovery and treatment means I'll avoid that.

I also am feeling confident since I've now had two different imaging tests done both of which were interpreted as positive for CCSVI. No reason to think the catheter venogram would show any different.

I need more smile emoticons! :D :D :D
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Postby MrSuccess » Wed Nov 17, 2010 6:44 pm

press on , kid


I'm in your corner




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Postby Cece » Wed Nov 17, 2010 8:25 pm

With success in my corner, I'm set....

Lol, I'm starting to feel like I'm milking my little diagnostic tests for all they're worth. Other threads have people actually getting treated.
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Postby newlywed4ever » Wed Nov 17, 2010 8:35 pm

Cece wrote:With success in my corner, I'm set....

Lol, I'm starting to feel like I'm milking my little diagnostic tests for all they're worth. Other threads have people actually getting treated.


:D But your journey has been fun for all of us...I've always thought there should be a number posted of "watchers"...that way you could see how many lives you've touched!...milk away!
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