CCSVI...but none of the symptoms

jackiejay · Post by **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?

concerned · Post by **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.

ikulo · Post by **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.

jackiejay · Post by **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

Cece · Post by **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?

jackiejay · Post by **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"....

Cece · Post by **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

jackiejay · Post by **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....

drsclafani · Post by **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.

jackiejay · Post by **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.

cheerleader · Post by **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

jackiejay · Post by **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.

Cece · Post by **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.... ;)

jackiejay · Post by **jackiejay** » Wed Jan 26, 2011 4:56 am

I live in Canada so having the procedure done is not in the cards yet.....

jackiejay · Post by **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.