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A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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cheerleader
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Post by cheerleader »

Husband--
see, I believe you, but actually--I'm just trying to make a point.
I'm sorry you see me as "ruining the thread" :)
That's actually kind of funny....all things considered.

There are medical papers out there that can take care of many of the lobs thrown out on these threads.

that's all I was saying,
ciao,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
malden

Post by malden »

CCSVIhusband wrote:I've given up on responding to people of that ilk ...
You given up? I have not noticed.

M.
Last edited by malden on Tue Jul 06, 2010 11:15 pm, edited 2 times in total.
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PCakes
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Post by PCakes »

thanks Cece.. i suspected this.. and was picturing someone standing on their head and how red their face gets. I think my issue, and my older sibs and my mom's, are/were.. valve/ web related.. I also have many friends and friends of friends, needing help but as of a couple of days ago I found out that a wonderful young woman (20) in my family is presenting significant symptoms..the rest of us were 'late bloomers'..NOW it's personal!!

Apologies to Cos for the hijack and Malden you are new to me.. peace out..
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CCSVIhusband
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Post by CCSVIhusband »

cheerleader wrote:Husband--
see, I believe you, but actually--I'm just trying to make a point.
I'm sorry you see me as "ruining the thread" :)
That's actually kind of funny....all things considered.

There are medical papers out there that can take care of many of the lobs thrown out on these threads.

that's all I was saying,
ciao,
cheer
Hope you don't think I was accusing you as "ruining the thread" ... I was NOT talking about you ... we love reading research.

It's the ones who have no research to back their claims (and no personal experience with CCSVI) that are ruining them.

We love all you do Cheer. In fact, we'd love it if you did more of it - but you're only 1 person.

RjW
malden

Post by malden »

cheerleader wrote:M--
You have not linked not one study. Did you read the medical studies that show retrograde flow in jugular veins?
you are wrong--and rude, too.
cheer
No, I am not. You linked some of them, and you alsow don't linked some of them too. That's your choice to link or not to link. But I read them all (linked and not linked). I am not one side person as you are. Bee good. M.
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patientx
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Post by patientx »

Costumenastional:

There is another possibility. From the Buffalo results and anecdotal results reported here, it would seem that these stenoses are indeed seen more often in people with MS, i.e. they are associated with having MS. Assuming this true, it is possible that the stenoses are a result of having MS, or some inflammatory process associated with the MS.

This is a re-post. I would like to get your opinion.
Last edited by patientx on Tue Jul 06, 2010 5:35 pm, edited 1 time in total.
malden

Post by malden »

CCSVIhusband wrote:....It's the ones who have no research to back their claims (and no personal experience with CCSVI) that are ruining them.
This is statement to some soap opera, not to real world of suffer. I am glad I have not 'personal experience with CCSVI' in some obscure part of the globe, where noname people take 5-10.000 € for 1 night stand. M.

Sadly, most of them dont come back on ThisIsMs - shame or restenosys?
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L
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Post by L »

I haven't read all the thread (sorry) so I'm probably just repeating something, but so little is known about CCSVI - it could be that other veins are involved, no? There was talk of the lilac vein in the Sardinia conference, but I don't think this is regularly investigated. Someone will have to correct me. I'm probably wrong. Also ould problems theoretically occur higher into the brain than scans take us ordinarily?
concerned

Post by concerned »

Malden wrote:
Lyon wrote:Hi Malden,
Not to compromise a fellow "dark-sider" but if valves above the heart are not especially important.......isn't that what ricci's problems involve, a smushed valve above the heart?

I'm also going to try to refresh my memory via reading ricci's old posts but offhand it seemed that's what his operation was due to repair.
Bob
I am in a BIG temptation not to answer in Rici thread...
'Tempations of Saint Antony' (Salvador Dali) -replica- is one of favorite paintings on my wall.

And.... for money.... they can repair whatever you want: valves, noses, buttocks, tits, veins, lips, chicks..... just name it :)

M.
At least the dark side appreciates good art.


Also, I really don't have an agenda to push. If all this turns out to be true, then fine. I'd be happy to see my mother get better or not get worse. I just don't think people should make claims about something before it's been proven, because that screws with people and their emotions.
malden

Post by malden »

concerned wrote:Also, I really don't have an agenda to push. If all this turns out to be true, then fine. I'd be happy to see my mother get better or not get worse. I just don't think people should make claims about something before it's been proven, because that screws with people and their emotions.
Yes, you are wright. Who am I and why I screw up people and their emotions. It't time to shout up. M.
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cheerleader
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Post by cheerleader »

patientx wrote:Costumenastional:

There is another possibility. From the Buffalo results and anecdotal results reported here, it would seem that these stenoses are indeed seen more often in people with MS, i.e. they are associated with having MS. Assuming this true, it is possible that the stenoses are a result of having MS, or some inflammatory process associated with the MS.

This is a re-post. I would like to get your opinion.
Patient--
this is a very valid point. Certainly, we'll probably see in some instances that the progression of MS, with more inflammation and turbulent blood flow will lead to worse MS and worse stenosis.
Here's report of a recent study on this very mechanism in atherosclerosis in arteries-
We have developed a model where we disturb blood flow in the carotid artery by partial ligation, and atherosclerosis appears within two weeks," he says. "This rapid progression allows us to demonstrate cause and effect, and to examine the landmark events at the beginning of the process."
Jo says that endothelial cells, which form the inner lining of blood vessels, are equipped with sensors that detect changes in fluid flow.
"Disturbed flow is what causes the endothelial cells to become inflamed," he says.
The inflammation resulting from "bad flow" conditions in a stretch of artery causes white blood cells to accumulate there, followed by buildup of cholesterol and lipids and plaque formation.
Just 48 hours after blood flow in the carotid arteries was disturbed, Ni and colleagues dissected the carotid arteries from the mice and used genome-wide microarray technology to identify hundreds of genes that were turned on or off in the endothelial cells.
http://www.sciencedaily.com/releases/20 ... 140922.htm

What makes CCSVI different is that the doctors are finding malformations that appear to be congenital. In Jeff's case, his neck muscles are too large and tight, and pinched off his jugulars at the ears. Maybe from his trumpet playing? We don't know. In Lew and Mel's case, they had two left jugulars and weird valves, in Cat's case it was an arachnoid cyst. Some people are born with only one jugular, some are blocked by webs or membraneous obstructions. Some are pinched by vertebrae. It's a mixed bag.

But does this mean that every case of CCSVI is going to be congenital? Too soon. There may be some that are created by inflammation and disturbed flow, like the arterial example above. And maybe having MS makes it worse over time. We'll see how that pans out with more research.
hope that explains a bit,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
concerned

Post by concerned »

Malden wrote:
concerned wrote:Also, I really don't have an agenda to push. If all this turns out to be true, then fine. I'd be happy to see my mother get better or not get worse. I just don't think people should make claims about something before it's been proven, because that screws with people and their emotions.
Yes, you are wright. Who am I and why I screw up people and their emotions. It't time to shout up. M.
?????????????

I meant that towards the other "ilk" but whatever.
Cece
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Post by Cece »

PCakes wrote:thanks Cece.. i suspected this.. and was picturing someone standing on their head and how red their face gets. I think my issue, and my older sibs and my mom's, are/were.. valve/ web related.. I also have many friends and friends of friends, needing help but as of a couple of days ago I found out that a wonderful young woman (20) in my family is presenting significant symptoms..the rest of us were 'late bloomers'..NOW it's personal!!

Apologies to Cos for the hijack and Malden you are new to me.. peace out..
I am sorry to hear about your relative, that is so young.

MS is not welcome at any age.

My apologies as well to Costumenastional.
Last edited by Cece on Tue Jul 06, 2010 10:35 pm, edited 1 time in total.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
Rokkit
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Post by Rokkit »

cheerleader wrote:I'm sorry you see me as "ruining the thread" :)
I can think of about 50 other threads I wish you'd ruin.
malden

Post by malden »

concerned wrote: ?????????????

I meant that towards the other "ilk" but whatever.
Sry, it was 3 o'clock in the morning, and my head was veeeeeery slow ;)

Best regards, M.
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