This Is MS Multiple Sclerosis Community: Knowledge & Support

Here are some common terms in the CCSVI handbook. Please PM me if there are additional terms you think we should add, or better definitions, and I'll update-
cheer

agenesis a type of narrowing (stenosis) of the vein seen by Dr. Zamboni - Absence, failure of formation, or imperfect development of any part.

annulus a type of narrowing (stenosis) of the vein seen by Dr. Zamboni- A ring, a circular or ring shaped structure, as in a ring shaped stricture of a vein

atresia a type of narrowing (stenosis) of the vein seen by Dr. Zamboni - Absence of a normal opening or normally patent lumen

Azygos vein - This is the vein which shows blockage in 86% of MS patients tested by Dr Zamboni. The vein running up the right side of the thoracic vertebral column of the spine. Takes deoxygenated blood from the posterior walls of the thorax and abdomen into the superior vena cava vein. It is called azygos, because it doesn’t have a partner vein on the left side of the body...it is unpaired.

CCSVI- Chronic Cerebrospinal Venous Insufficiency The medical condition termed by Dr. Paulo Zamboni. A condition where deoxyginated bloodflow from the veins surrounding the brain and spine is slowed or blocked in its return to the heart. This condition arises from blockage in the internal jugular and/or azygos veins. The Cerebrospinal system is the brain and spine. (Chronic venous insufficiency or CVI is a medical term referring to blockage in return of blood from the legs to the heart.)

endovascular procedure - originally designed as a way to diagnose problems in blood vessels -it is a minimally invasive surgical procedure used to place the stents in the veins. A catheter is injected into a major vein near the groin, using dye, it can be seen on live x-ray as it travels up the body.

internal jugular veins - Dr. Zamboni found stenosis here in 91% of the MS patients he tested. These major veins collect blood from the brain, the outside of the face and the neck. They run down the inside of the neck -outside the internal and common carotid arteries and unite with the subclavian vein to form the innominate vein.

interventional radiologist -a subspecialty of radiology in which minimally invasive procedures are performed using image guidance. Some of these procedures are done for purely diagnostic purposes while others are done for treatment purposes (e.g., stent placement). Pictures are used to direct these procedures, which are usually done with needles or other tiny instruments like small tubes called catheters. The images provide road maps that allow the Interventional Radiologist to guide these instruments through the body to the areas of interest.

Magnetic resonance venography
The type of magnetic resonance imaging (MRI) used to visualize veins. The MRV uses the same machine as an MRI, but a special computer software allows it to only extract generated-by-blood images, as it flows through the veins. These images give doctors a rough idea of whether blood flow through a vein of interest is affected by blood clots or other disease processes

patency -degree of openness and lack of obstruction- this term is used in relation to stents and the percentage of blood flow allowed through a stented vein.

reflux - the backing up of blood into brain and spine, caused by blockage in the veins

septum a type of stenosis of the vein seen by Dr. Zamboni - A thin wall dividing two cavities or masses of softer tissue

stenosis - literally means “narrowing.” A blockage in veins caused by an abnormal narrowing of the vein itself.

stent - a man-made 'tube' constructed of mesh metal, inserted into the vein to prevent, or counteract, a localized flow constriction.

vein- the blood vessel that carries deoxyginated blood back to the heart

venography (also called phlebography) is a procedure in which an x-ray of the veins, a venogram, is taken after a special dye is injected into the veins.

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Nice concise summary! Helps me explain to others about CCSVI. Thanks for doing this.

Nell

I appreciate the update and needed a few of the basic terms corrected, thanks. Islandgirl

jbro there is no simple quick answer you have to read the big thread --53 pages or so but you'll understand how the thinking developed here from that.

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I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics

Okay, thanks. I'll read up and learn from that.

Help--Could someone please give me contact information for Dr. Drake at Stanford?????

650-725-3806
you get a message that tells you they are overwhelmed with calls. it asks you to leave a message and be patient for your call back. i have done just that 4 days ago. Dang i wish i was better at patients. I spoke to someone there and she mentioned clinical trials at the beginning of next year. Does anyone know anything about this, Cheer?
I have also emailed Dr. Simka in Poland. i am waiting to hear from him as well.
Does anyone out there have any advise on how to expedite any of this? I am pretty sure i have done all i can do, but i just thought i would ask.

I understand that all these docs are overwhelmed. I guess i would sleep better if i was at least on a waiting list. I am all ears for any suggestions.

Oh by the way, thanks to everyone who makes thisisms.com a reality. I read it daily and appreciate it greatly.
A thousand thank you's to all of you, especially Cheer, thank you.

-ceci

Thanks Ceci--I actually talked to someone in person once I realized it was Dr. Dake and not Dr. Drake. She was nice, took my name and said that they were getting 80-100 calls per day. I live in Chapel Hill, NC which is also a huge research area--we have Duke and UNC medical centers an MS clinic and a neurovascular clinic and from what I can tell nobody is doing any thing regarding CCSVI. I sent a letter into the Raleigh News and Observer. Anyway, I think I've gotten through my CCSVI binge where I was obsessed with CCSVI, couldn't stop checking the internet etc. I'm a little more sober now and realize it's probably going to be much of the same for a while.

I am so glad to have this website where I can connect with other MSers in the thralls of CCSVI--and then go back to my other life.

Judi[/b]

Hi Judy,
Glad to be of service. I really wanted his name to be Drake as well. I think a soap opera back in the day had a Dr. Drake.
Now it's the ever famous "wait and see" game i play with ms all too often. I hope I get a call back from Dr. Dake. I know i am one of sooooo many with that hope. 80-100 calls a days, wow- it's gonna be a while.
Take care
-ceci

Cervin,

We started this process back in August for my husband. We have talked to Alex and Dr. Dake and are still waiting. So, you see it doesn't happen that easily. Some on here were more fortunate and got in quickly, but I'm thinking there were (at that time) many things that came into play - how easy was it for Alex to get your insurance approval would be one issue.

cervin - This is a "Sticky" regarding the terms associated with CCSVI. I have posted a reply here - http://www.thisisms.com/ftopicp-78661.html#78661

I think this is needed too:

CTEVD - Combined Transcranial and Extracranial Venous Doppler this is a test
CRET - Controlled Randomized Endovascular Therapy
this is angioplasty

I hope that this is the most appropriate thread?
Where does a CT Angiogram Intercranial stand in comparison with an MRV for detecting CCSVI? The MRV is often called 'the gold standard test'. Is the CT scan on a par or lower down the scale?

Yesterday, I had the CT scan and the test also included a dye being injected into my veins to try to detect a blockage. This test was done under the NHS. A previous doppler test had proved negative. As I have said on other threads I am not overly optomistic that the CT scan will prove to be more effective than the doppler. I know that I am unlikely to get the result of this test until after I return from Poland next week.

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Nigel

Im looking for a good definition for hyperperfusion