NO blood flow in L Jug!

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

Re: atlas - shye

Postby akaheather » Wed Apr 14, 2010 10:20 am

Peaches1 wrote:I am seeing my doc today to go over the MRV, she doesn't know what to look for, just trying to help me


It sounds like you are going to have to tell her what you are looking for. It might help to show her some of pictures from Dr. Haacke's site. They are crystal clear. There are also many posted here on TIMS to choose from.
Do you have someone willing to offer treatment or have you not gotten that far yet? (and don't get me wrong, testing is a fantastic start. )

Heather

On a side note, this situation really stinks! I can not believe we are in a situation where we have to show our doctors what to do!!! YIKES!!!
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Postby zap » Wed Apr 14, 2010 11:23 am

mshusband wrote:MS (demyelenization)


Don't forget that studies show that damage to axons and oligodendrocytes happens BEFORE the lesions / demyelenization that shows up on MRIs ...
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doppler

Postby Peaches1 » Wed Apr 14, 2010 5:49 pm

OK, I saw my doc today, she is ordering a colored doppler next wk at a place she uses often. She will talk to them re: the protocol.
And then if that fails, she will give me a venography, just trying to avoid it.
She was very concerned about my flat left jug, She said my MRV looked very abnormal with just one. Again, she is learning with the rest of us.
Then I will still have to find a IR for the procedure Heather.
Have you had any testing? If you are having trouble let me know
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Re: NO blood flow in L Jug!

Postby Downunder » Wed Apr 14, 2010 6:23 pm

[/quote]

According to Dr. Zamboni there must be TWO sites of stenosis, so I suspect there might be something else wrong besides the left internal jugular vein. A Doppler ultrasound would be a good next step, assuming you can find someone who knows how to do it properly.

Donnchadh[/quote]

From my understanding, stenoses are only ONE criteria (as per Dr Z). There are 5 criteria in total with reflux being another. You can have 10 stenoses or 1, but that still counts as one criteria.
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Postby costumenastional » Thu Apr 15, 2010 12:07 am

CureIous wrote:I'm not so sure Zamboni would equate zero flow with a singular stenosis and toss out the dx. I'm also not so sure that his criteria is going to specifically include/exclude the entire 100% of the MS population. That's HIS criteria, and is what is needed to sell this to the scientific world. I would be hesitant to exclude myself from any further pursuit of this based on that criteria alone. It kinda makes too much sense to have yet another MS'er with not just a stenosis but fairly a complete occlusion, sounds pretty gun-smokey to me...

Mark


exactly.
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Dr S's reply

Postby Peaches1 » Thu Apr 15, 2010 2:30 pm

Posted: Thu Apr 15, 2010 11:57 am Post subject: Re: Only 1 jug-question for Dr S

--------------------------------------------------------------------------------

Peaches1 wrote:
Dr. Sclafani
I have a question for you - Is it normal and OK to have just one jugular vein? My MRV, from last wk, states "a tiny amount of flow in the left transverse/sigmoid sinus system. The images of hte neck demonstrate no significant flow in the left-sided jugular vein"
Thanks for the input and all that you are doing for this group.
Hugs from TX


it is very uncommon to be born with one jugular vein. It occurs usually when one of them becomes thrombosed usually after a catheter has been placed in it for chemotherapy and dialysis

that being said, it sounds from your mrv report as if you do indeed have a problem with your venous outflow. but it sounds like there is some problem with your dural sinus, rather than your jugular vein. thrombosis of the jugular vein has been reported to result from stenosis of the jugular vein Of course you have told us nothing about your azygous vein. ahaa, the only way to accurately see the azygous vein is via catheter venography. So are you scheduled?
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venogram

Postby Peaches1 » Thu Apr 15, 2010 2:43 pm

What is the difference between a venogram and venography?
I was going to try and get a colored doppler but Dr S is saying venography. My ins is covering it at 100% right now. Would anyone mess with a doppler?
Thanks for the input
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Postby akaheather » Thu Apr 15, 2010 6:20 pm

I have actually already been treated at Stanford, but thanks for asking. I just figured there might be more Texans curious to know where you found treatment. I definately know a few Austinites who are. (If you don't mind sharing your Drs name in a pm, that would be awesome.)
Also, for what it's worth, I would (and did) go for the venogram. It is the only sure fire way to really determine what the problem is. It was relatively painless, at most maybe mildy uncomfortable. Good luck!
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