Do U CCSVI?
CCSVI isn’t a roman numeral signifying the latest “Rocky” sequel.
CCSVI is an initialism (not an acronym) that stands for the hottest topic of discussion among MSers since the advent of adult diapers.
CCSVI is short for chronic cerebrospinal venous insufficiency. Now you know why they call it “CCSVI”—-Kinda like how they shorten the name “Richard” to “Dick” (although I would prefer to be called Richard thank you very much).
Anywho, the skinny on CCSVI is that blood flowing from the brain to the heart is slowed and may even reflow BACK to the brain.
It isn’t yet known what role CCSVI plays in the MS game, but further research is being conducted. You can read the latest on CCSVI in a special report in the Summer 2010 edition of “Momentum,” the magazine of the National MS Society. Or, visit their website—I offer a link on the right side of this mess I call My Odd Sock.
Now, I am NOT a scientist, although I sometimes portray one on these pages.
But I do scratch my balding, stability-ball sized head when I think about CCSVI and how it may affect me.
I wonder if CCSVI is the reason I am continuously stretching my neck, cracking my neck, seeking a very brief moment of relief from the constant pressure I feel in the back of my head.
I know of another MSer who has this same habit of cracking his neck on the routine basis.
I feel as though I have a weight laying on the back of my neck all the time.
Is this a result of CCSVI?
Is there some connection here?
Do you feel pressure in the back of YOUR head?
I can’t tell anything looking at my latest MRI films……
But I have to believe if blood collecting in the back of my head is the cause of this continuous pressure I feel, maybe there IS something to this “chronic cerebrospinal venous insufficiency.”
(With the size of my head, I also now realize the enormous pressure building behind the Hoover Dam!)
Educate yourself about CCSVI because as you may well know, My Odd Sock is an expert on nothing, only an idiot on everything.
Here’s hoping you have terrific blood flow.
11 Replies to “Do U CCSVI?”
I have an MS friend who recently had the CCSVI liberation treatment done in Poland, and she has reported an instant improvement in her symptoms.
I remain skeptical about this theory as a cause of MS, however. My question is whether it is simply another effect of MS. One subject of a clinical study showed a vein blockage in his first ultrasound–but no blockage during a second scan. He had not had the vein ballooned or stented prior to the second scan.
I wonder whether vein inflammation/blockage waxes and wanes, just as our CNS lesions show enhancement on an MRI during the inflammatory phase, then dim out or disappear after the inflammation stops and scarring develops.
Could a virus such as EBV dwelling inside us make our immune systems attack our veins, causing a bout of vasculitis and subsequent vein blockage?
So many questions, so few answers…
“Do you feel pressure in the back of YOUR head?
Yep. Keep stretching my neck too. Go to chiropractor weekly. Think it helps.
Before I had the liberation treatment I had constant tension and pain in my neck and shoulders all day and night long. When i lay down to sleep I would get a burning (heat) pounding pain at the back of my head in the base of my skull that would boom boom boom and grow stronger in intensity and spread up in my skull bones to the bones behind each ear. I complained to my GP about this many times and was finally sent to an allergist. FAIL I went to chiro at least 3 times a month. FAIL I had massage once a month. FAIL Then I had the liberation treatment. BINGO!!!
It’s ALL GONE!!!! 😀 Really, really
@Kim-I believe CCSVI is just one of the many (Probably main) causes of MS.
MRV’s and Doppler ultrasounds are not diagnostic in DX’ing CCSVI. They can only give an indication and often false negative results occur. Neither image the azygos arch properly either. The only way to truly see blockages is with the venogram. The CNS lessions that light up on our MRI scans are now known to be iron deposits.The iron occurs because blood that should be draining out from the brain is refluxing and being pushed up into the brain. The iron build up on the vessels causes the inflammation and weakens the vessel walls allowing the T cells to jump the BBB. This theory explains it all like no other theory has before. The reason why we seem to get better right after the treatment is we were suffering from hypoxia pre treatment and as soon as the veins get unblocked voila! I beleive that over time, post op, the iron deposits will go away and more of our symptoms caused by the inflammation will too. Time will tell.
I had the ccsvi done where they did the ballon trement I felt fine for 2 days but I went back to the way I use to be. People I spoke with that had the sa
e thing done went back to the way the use to be. People that had a stent put in felt fine I belive that a person that has been diagnos more than 20 years a ballon is not going to work they need a stent put in to keep the vain opened longer cause the ballon will keep it open for a very short time.
I had the ccsvi done where they did the ballon trement I felt fine for 2 days but I went back to the way I use to be. People I spoke with that had the sa
e thing done went back to the way the use to be. People that had a stent put in felt fine I belive that a person that has been diagnos more than 20 years a ballon is not going to work they need a stent put in to keep the vain opened longer cause the ballon will keep it open for a very short time. V
Excellent. I haven’t had a corresponding feeling here in Russia, but I imagine that isn’t too suprising.
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This is very interesting. I always feel a need to crack my neck or a constant pressure back there. Thanks for the information.