Testing??

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

Testing??

Postby SophieandElle » Tue Nov 25, 2014 10:02 am

Hi, for those who have been tested:

--If the IR finds stenoses in multiple veins will they all be treated??? (ie. subclavian, axillary, internal mammary...) not just IJV being treated.

--Will the IR look at other veins besides the usual suspects?

--If you were able to get insurance to help you with this cost, HOW did you do that?!?!
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Re: Testing??

Postby Cece » Wed Nov 26, 2014 2:06 pm

That depends on the IR. Some IRs only look at the internal jugular veins and the azygous veins, some look at other veins too. I would want the left renal vein looked at because a blockage there causes flow to block up in the spinal veins.

It was easier to get this covered by insurance in the early days. Still, it can be done today. If you travel to a "big name" IR, they will require an out-of-pocket payment. If you see a local IR, who may have never done a CCSVI procedure before and will be more likely to damage the vein while trying to improve the vein, there may be a much greater chance that insurance will cover it.
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Re: Testing??

Postby AMcG » Thu Nov 27, 2014 11:04 am

Hello Sophie and Ellie

An IR experienced in looking for CCSVI will look at those veins which may affect drainage of the brain. They will usually look at the IJVs and Azygous veins but other veins like the subclavian are possible candidates although I think stenoses there are very rare. I cannot see why anyone would look at the axillary or internal mammary veins. Dr S and others also look at the veins below the heart which are involved in nutcracker and May-Thurner syndromes as they can induce congestion in the veins which drain your spinal chord.

If Dr S was your IR you would be given ample time before hand to ask exactly which veins would or should be looked at and you could request that extra attention be paid to whatever veins you wanted. The same would be true about treatment of any stenoses found. You could express your own preference either way before the procedure was begun. It may be the same with other experienced IRs but I only have experience of Dr S. It seems to me you may have concerns about missing problems which should be treated and/or under treatment which I agree are important concerns which have often also been mentioned by Dr S. In that light I would strongly advise that you approach an IR with sufficient experience to properly address them.
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Re: Testing??

Postby SophieandElle » Sat Nov 29, 2014 7:20 am

Thanks for the replies!

The reason I inquire about int. mammary and axillary: months before I became fully symptomatic, I noticed blue veins along my chest, through my armpits, down my rib cage. I thought it was really odd - no way was I pregnant or anything like that. It went along with breast pain so I saw a breast surgeon who said the veins were just there because I am thin with fair skin.

Within 2 months I was tingling in feet and hands, with face pain, etc. Getting worse everyday, and I have to believe that those veins indicate something.

Been seeing a local IR and may have to travel to Dr S this summer (I am a teacher).

Thanks for your insights!!!!
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Re: Testing??

Postby Cece » Sun Nov 30, 2014 7:08 am

SophieandElle wrote:The reason I inquire about int. mammary and axillary: months before I became fully symptomatic, I noticed blue veins along my chest, through my armpits, down my rib cage.

Those veins could have been serving as collateral veins, taking flow that previously had gone through a deeper vein until the deeper vein was blocked. The deeper vein could be the innominate vein. The jugular veins drain into the innominate vein, so a blockage or compression there could slow drainage from the brain resulting in neurological symptoms, and a blockage in the innominate could direct collateral flow into the surface veins resulting in what you saw. I am not a doctor and this is just a conjecture!! There have been people who've had the innominate vein treated as part of a CCSVI treatment.
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Re: Testing??

Postby drsclafani » Mon Dec 01, 2014 1:31 pm

SophieandElle wrote:Hi, for those who have been tested:

--If the IR finds stenoses in multiple veins will they all be treated??? (ie. subclavian, axillary, internal mammary...) not just IJV being treated.

--Will the IR look at other veins besides the usual suspects?

--If you were able to get insurance to help you with this cost, HOW did you do that?!?!


In order to "test" a vein, one must put a catheter into it and then inject xray contrast media to see the interior of the vein. Then study the veins. As you can imagine this can be a laborious and time consuming effort. For these reasons, the interventionalist must decide which veins are the appropriate ones to study. This is based upon the physiology of the disease and the anatomy.

for these reasons, we all look at the following veins because they directly drain the venous blood of the spine and the brain AND are of sufficient size to make a difference. They include:
internal jugular vein, right and left
azygos vein

in order to see the entire internal jugular vein, it is necessary to put the catheter into the dural sinus that drains into the internal jugular vein. Most IRs do not image the dural sinus veins but only put the catheter into the middle of the internal jugular vein because it is easier to do, or because they have decided that they would do nothing about abnormalities of the upper veins. I always do these veins for a complete evaluation of the internal jugular veins, even though I would never attempt treatment of a dural sinus stenosis in an outpatient center. However I would refer to a hospital based specialist in treating such stenosis.

Other IRs, myself included, see that there are other veins that can affect the physiology of CCSVI while not typically veins that drain the spine and brain.
these include the left kidney vein
the left iliac vein
the left ascending lumbar vein.

There are some other veins that can also indirectly affect cerebrospinal venous drainage, but they have not been shown to be a common component of ccsvi. These veins include the subclavian veins and the brachiocephalic vein and the superior vena cava. I look at the brachiocephalic veins and the superior vena cava but thankfully these do not commonly need treatment

i hope this helps you have better understanding

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Re: Testing??

Postby drsclafani » Mon Dec 01, 2014 1:35 pm

SophieandElle wrote:Thanks for the replies!

The reason I inquire about int. mammary and axillary: months before I became fully symptomatic, I noticed blue veins along my chest, through my armpits, down my rib cage. I thought it was really odd - no way was I pregnant or anything like that. It went along with breast pain so I saw a breast surgeon who said the veins were just there because I am thin with fair skin.

Within 2 months I was tingling in feet and hands, with face pain, etc. Getting worse everyday, and I have to believe that those veins indicate something.

Been seeing a local IR and may have to travel to Dr S this summer (I am a teacher).

Thanks for your insights!!!!

your surgeon is probably correct if you have fair skin. Another possibility is some dysautonomia associated with your MS
However stenosis of the superior vena cava or the subclavian vein could create collateral enlargement of these veins. I would look carefully at your skin veins and perhaps expand what i do based upon your particular situation but i would not generalize to study these veins in everyone

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