CCSVI diagnosis - Questions

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

CCSVI diagnosis - Questions

Postby CCSVIAnaMaria » Thu Sep 02, 2010 11:08 am

Hi everyone,

I'm new here so I hope I'm posting in the right place.
I'm a 55 year old female MS patient from Portugal. Unfortunately I tried Betaferon and Tysabri and my MS symptoms are still getting worse (and I had recent relapses).

After doing some research on CCSVI I managed to spike some interest of a radiology team. Today I just got an angio-MRI done which detected a stenosis on my right jugular vein but nothing abnormal on the azygos veins.

My first question is that since I have a very pronouced paraparesis on my legs, especially on my left leg, shouldn't I also have a stenosis on the azygos (since I have the notion that when there are stenosis on the azygos it affects the legs)?

The second question is if the agio-MRI is good enough to diagnose CCSVI or if I should go and have a venography done namely to better see the azygos veins.
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Re: CCSVI diagnosis - Questions

Postby tzootsi » Thu Sep 02, 2010 5:42 pm

CCSVIAnaMaria wrote:Hi everyone,

I'm new here so I hope I'm posting in the right place.
I'm a 55 year old female MS patient from Portugal. Unfortunately I tried Betaferon and Tysabri and my MS symptoms are still getting worse (and I had recent relapses).

After doing some research on CCSVI I managed to spike some interest of a radiology team. Today I just got an angio-MRI done which detected a stenosis on my right jugular vein but nothing abnormal on the azygos veins.

My first question is that since I have a very pronouced paraparesis on my legs, especially on my left leg, shouldn't I also have a stenosis on the azygos (since I have the notion that when there are stenosis on the azygos it affects the legs)?

The second question is if the agio-MRI is good enough to diagnose CCSVI or if I should go and have a venography done namely to better see the azygos veins.


Ana Maria,

I'll try answering your questions, since my wife had the liberation treatment in April.
I'm not sure what you mean by an 'Angio-MRI'. Is this done with a catheter or is it just an MRI? The usual procedure to see jugular issues in the USA is a doppler ultrasound on the neck. Some doctors also do an MRV (MRI of the veins). If something is found, then a venogram (catheter) is scheduled. During the venogram procedure, the ballooning is done if necessary.
Altough the azygos is often associated with leg problems, this is not always the case. MS is so variable that there are no clear patterns.
As far as I know, a properly done venogram (venography) is the only way to see azygos problems.

ps: we were in Portugal last year, and loved it!
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Postby CCSVIAnaMaria » Fri Sep 03, 2010 3:46 am

Hi, thanks for your answer!
I'm Ana Maria's daughter :)

The proceidure we called "angio-MRI", we don't really know how it is called in english, it consists of an MRI that shows the veins and possible stenosis. The only catheter that was used was inserted in the arm to get the contrast liquid in. I don't know if this is what is called an MRV.

This first proceidure was done to see if we should go for a venography/venogram or not. Doctors are still taking baby steps on the CCSVI detection/treatment so they thought it would be better to start with a less invasive exam. We were lucky since my mother found a young doctor (radiologist) which is really eager to study this and learn about this :) I also heard we have one of the best interventional radiology teams in the country :)

So now, since they found a stenosis, which was vital to decide if they would do a venography or not, they decided that my mother should do it. When they perform this proceidure they will also use the balloon technique on the stenosis they find. We just want to make sure that they check the azygos aswell because we read on several articles and papers and you also said it, that the azygos can only be properly observated by doing a venography.

So in spite of not wanting to get our hopes up, since the real results can only be seen after the "liberation" proceidure has been done, we are happy that we managed to get a venography :)

I'm glad you liked Portugal! :)
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Postby Cece » Fri Sep 03, 2010 7:36 am

Another area to check along with the jugular and the azygous is the lumbar veins. A condition called "May Thurner" syndrome is sometimes found. May Thurner is when the left iliac vein is compressed by the left iliac artery. If a person has CCSVI blockages in the azygous, May Thurner syndrome would make things worse.

Best wishes to you, Ana Maria. I am glad that you will be getting the procedure.
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Postby mtf » Fri Sep 03, 2010 8:26 am

Hi Ana Maria,

I live in Lisbon and I have SPMS (as you can see from my posts). I had the treatment in Poland almost 3 months ago and I'll have the 2nd one performed this time in Lisbon. I'll report back in some days. If you want you can PM me and I'll happy to talk to you.
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