This Is MS Multiple Sclerosis Community: Knowledge & Support

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!!!

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

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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Mino/Copaxone, IVIG
LDN, Prokarin
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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.

exactly.

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

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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?

_________________
Mino/Copaxone, IVIG
LDN, Prokarin
</li>

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

_________________
Mino/Copaxone, IVIG
LDN, Prokarin
</li>

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!