electric's question on CCSVI

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electric's question on CCSVI

Postby jimmylegs » Tue Jan 19, 2010 7:42 am

STENOSIS PROCEDURE HISTORY

Date/location of testing/procedure: Katowice Poland
Type of venographic study: (MRV, Doppler) Color Doppler
Diagnosis:
Color Doppler sonography of internal jugular veins and vertebral veins

Right internal jugular vein - The vein is occluded by membrane, which is situated just above the junction with brachiocephalic vein, the flow in the vein is very low

Left internal jugular vein - normal

Vertebral veins - normal


I am not sure if this means I have CCSVI or not! I am a little confused, can CCSVI be caused by a membrane instead of a stenosis?
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Postby LR1234 » Tue Jan 19, 2010 7:49 am

I think CCSVI is anything that is causing reduced flow of blood from the vein.
I had an issue with my left jugular vein valve which prevented blood flow. Others have membranes in the vein, and some have stenosis.

My valve was ballooned open so hopefully that has done the job
Last edited by LR1234 on Tue Jan 19, 2010 7:57 am, edited 1 time in total.
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Postby cheerleader » Tue Jan 19, 2010 7:52 am

Yes, membranous blockage of veins implies CCSVI, since the tissue blocks the flow of venous return to the heart. The good news is that this membrane can be opened up with a balloon, and is an easier procedure. Dr. Zamboni has treated a few of these, as has Simka. I'm sure Dr. Simka will advise on what comes next-
best of luck!
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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby ozarkcanoer » Tue Jan 19, 2010 8:24 am

I was just wondering about the requirements for definite CCSVI as set by Dr Zamboni : that a person had to have 2 of 5 criteria to be diagnosed with CCSVI ? Do Dr Dake and Dr Simka consider just one criteria enough ?

From his latest paper :

"We previously reported that the CCSVI diagnosis needs to fulfill at least two of the five ECD indicators of CCSVI."

I wonder if someone only has one venous problem observed on MRV (as opposed to ECD) if that is enough ? Or is Dr Zamboni being extra cautious in the name of science by requiring 2 ECD criteria ?

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Postby cheerleader » Tue Jan 19, 2010 8:31 am

The doppler criteria was set so that Dr. Zamboni could have permission to do the more invasive venography test. Dr. Zamboni did not have MRV available, and his ethics committee required proof of flow blockage before the venography. Venography is when the catheter is introduced into the vein and all can be seen, blockage, flow, etc.
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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby ozarkcanoer » Tue Jan 19, 2010 8:41 am

Thanks, cheer. So I assume that for people who are being imaged outside of a formal study that one malformation on an MRV is sufficient for a CCSVI diagnosis. Hopefully there will be a consensus in the future on the proper criteria, ECD or MRV, that will warrant further investigation.

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Postby electric1 » Tue Jan 19, 2010 9:38 am

Thanks everyone

What is ECD?

What are the 5 signs of ccsvi?

I am trying to get the measured flow rates (mL/sec?)
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Postby ozarkcanoer » Tue Jan 19, 2010 10:25 am

electric,

Here are two of Zamboni's papers that you must read to understand your questions :


http://jnnp.bmj.com/cgi/content/full/80/4/392

http://www.ctv.ca/generic/WebSpecials/pdf/YMVA_4198_Zamboni_final.pdf

1. echo color Doppler (ECD)

2. The 5 doppler criteria are described fully in the first paper
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