CCSVI...but none of the symptoms

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

CCSVI...but none of the symptoms

Postby jackiejay » Tue Jan 25, 2011 10:48 am

how common is it for someone who has CCSVI (3 out of the 5 criteria) to not have any of the common symptoms?
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Postby concerned » Tue Jan 25, 2011 10:51 am

The original BNAC study that was never released (that I know of) found CCSVI in almost 1 in 4 healthy controls. Going by that, I would say, yes, it is common.
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Postby ikulo » Tue Jan 25, 2011 11:15 am

The next step would be studying the genetic differences between those with CCSVI/MS and CCSVI/no MS. It could be that a certain genetic mutation in the immune system combines with the effects of CCSVI to create MS. Just a thought.
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Postby jackiejay » Tue Jan 25, 2011 11:55 am

sorry, I meant to say in original post...how common is it for someone with MS and CCSVI to not have any of the common CCSVI symptoms
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Postby Cece » Tue Jan 25, 2011 12:42 pm

jackiejay wrote:sorry, I meant to say in original post...how common is it for someone with MS and CCSVI to not have any of the common CCSVI symptoms

My guess has been that the common CCSVI symptoms are most common in people like me, with two blocked jugulars, and less in someone with maybe a blockage in one jugular and an azygous but with one functioning jugular. Degree of blockage might make a difference too?
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Postby jackiejay » Tue Jan 25, 2011 12:52 pm

ok, that makes sense...report says: "venous reflux/insufficiency is noted in the left internal jugular vein at 0 and 90 degrees"....
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Postby Cece » Tue Jan 25, 2011 1:00 pm

jackiejay wrote:ok, that makes sense...report says: "venous reflux/insufficiency is noted in the left internal jugular vein at 0 and 90 degrees"....

Here's Dr. Sclafani's sample interpretation of a doppler ultrasound report, if it helps:
http://www.thisisms.com/ftopicp-145123.html#145123
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Postby jackiejay » Tue Jan 25, 2011 1:41 pm

I have seen that interpretation given by Dr. Sclafani but this report does not have details like that.....just basically gives the 3 qualifying factors which were seen to give the diagnosis of CCSVI....
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Postby drsclafani » Tue Jan 25, 2011 4:48 pm

jackiejay wrote:I have seen that interpretation given by Dr. Sclafani but this report does not have details like that.....just basically gives the 3 qualifying factors which were seen to give the diagnosis of CCSVI....

let me help you

first there are five criteria. you have described that you have one,

"venous reflux/insufficiency is noted in the left internal jugular vein at 0 and 90 degrees"....

This fulfills ONE of the five criteria.

one criterion does not fulfill the Zamboni criteria of CCSVI, namely that TWO of the fiive criteria are present. One criteria is not necessarily normal, Some healthy control patients can have One of the criteria but not more than one. This is statistical.

Dr. Z never said that all patients with CCSVI had to have two criteria. He is saying that it is statistically impossible to separate patients with CCSVI from healthy controls when ONE of the criteria are present.

If i were your consulting doctor I would factor in your one criteria ultrasound with all other history and physical findings and to decide whether to go to the Gold Standard of venography to finally prove whether you had obstructed veins since the screening test was inconclusive.

i hope this helps.
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Postby jackiejay » Tue Jan 25, 2011 4:58 pm

Thank you Dr. Sclafani for posting a reply...actually that was just one of the criteria listed in the conclusion of the report...the other two were: Abnormal flow is noted in the deep cerebral veins.
B mode abnormalities noted bilaterally.
and then the first one was " Venous reflux/insufficiency is noted in the left internal jugular veins at 0 and 90 degrees."
So that makes up the 3 of the 5 criteria.
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Postby cheerleader » Tue Jan 25, 2011 5:03 pm

jackiejay wrote:Thank you Dr. Sclafani for posting a reply...actually that was just one of the criteria listed in the conclusion of the report...the other two were: Abnormal flow is noted in the deep cerebral veins.
B mode abnormalities noted bilaterally.
and then the first one was " Venous reflux/insufficiency is noted in the left internal jugular veins at 0 and 90 degrees."
So that makes up the 3 of the 5 criteria.


Hi Jackie--
You have an MS diagnosis and CCSVI, is that correct?
There are no "CCSVI symptoms." There are some symptoms that seem to be relieved almost immediately by angioplasty for CCSVI, and those include fatigue, heat intolerence and others....but people with CCSVI run the gamut of symptoms, just like people with MS.
What are your MS symptoms?
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby jackiejay » Tue Jan 25, 2011 5:13 pm

Sorry, Cheerleader for the use of the phrase "CCSVI symptoms"....what I meant was that a lot of the symptoms that seem to be most commonly relieved with the CCSVI procedure have not been experienced yet.....the MS symptoms were tingling and numbness in legs.
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Postby Cece » Tue Jan 25, 2011 5:18 pm

I've also heard people say they didn't even realize they had cogfog or vision deficits or a little fatigue until after the procedure when it was gone.

One way to find out.... ;)
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Postby jackiejay » Wed Jan 26, 2011 4:56 am

I live in Canada so having the procedure done is not in the cards yet.....
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Postby jackiejay » Wed Jan 26, 2011 3:59 pm

can anyone explain, "B mode abnormalities noted bilaterally"...would this be something congenital pertaining to valves, etc.
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