No evidence of CCSVI at MS onset

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

Re: Let's Be Objective

Postby Cece » Thu Feb 03, 2011 4:46 pm

Extracranial stenoses are the ones in our jugulars. An intracranial stenosis, which some people here have, would be within the brain or skull; this would include the dural sinuses. Extracranial CCSVI is being treated; intracranial is not unless possibly it is at PI - if anyone has been treated in the dural sinuses at PI, I would love to hear about it, this is not being done to my knowledge.
MarkW wrote:Look for problems with valves in veins, using catheter venography, in CIS if you are are a researcher.

The researchers get to have all the fun.

Nothing to pillory there, Mark. I look forward to cause and effect being further determined. The hope of course is that CCSVI is the cause of MS and that fixing CCSVI will fix MS.
The etiology (root causes) of MS is unknown after 150 years of research, please do not expect a answer soon.

But they did not have MRIs, transcranial dopplers, or most importantly Dr. Zamboni for those full 150 years!

It will be really telling if treating CCSVI arrests the progression of MS. Or if treating CCSVI will prevent people from developing MS. With CIS, a high percentage of pwCIS will develop MS within a certain time frame. So researchers can look at the pwCIS who are treated for CCSVI and see if they then develop MS at the expected percentage rate. (Or have a control group, if there is a neurological partner with CIS patients who are choosing not to pursue CCSVI treatment at this time, preferably after being fully informed.) Same with optic neuritis, the statistics are high for how likely it is to develop MS after a single incidence of optic neuritis. So if patients with optic neuritis with CCSVI are treated and then they do no develop MS at the expected percentage...well it still might not be "the cause," it might be a promoter, but how exciting is that.
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Re: Cranium

Postby fiddler » Thu Feb 03, 2011 5:07 pm

Concerned says:
I don't see a majority reporting improvements, maybe 50/50 at best, but that's just a guess. Also, not many of these improvements seem to last very long.


Where are you getting your information from, Concerned? At http://www.CCSVI-Tracking.com of over 400 "liberated" participants, 64% are reporting improvement in quality of life, 74% reduced fatigue, and 59% improved mobility... altogether 81% report improved average symptoms. Looking at those who have been tracked for a longer period (9 months or more - there are 19 of us in that group), our symptoms have improved and, on average, remain improved. Do you have anything more than anecdotal evidence or "a vague feeling" to back up your claims that only 50% see improvements and "not many of those last"?

PS: As Concerned says, the right term should be intra-cranial (within the skull), not inter-cranial
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Postby 1eye » Thu Feb 03, 2011 5:13 pm

Wow, that would have been great for me. Optic neuritis was likely my second symptom, with many years between first and third (or Who and I Dunno). If I had had it done back then, maybe I never would have gotten the CCSVI!
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Re: Let's Be Objective

Postby silverbirch » Thu Feb 03, 2011 5:34 pm

Cece wrote:. An intracranial stenosis, which some people here have, would be within the brain or skull; this would include the dural sinuses. Extracranial CCSVI is being treated; intracranial is not unless possibly it is at PI - if anyone has been treated in the dural sinuses at PI, I would love to hear about it, this is not being done to my knowledge.


Thankyou Cece you read between the lines ... Extracranial I understand that thanks to your time in the forum along with others .

I have no concept of Intracranial/MS ... and would love to have a lesson on it .
Reading this thread and not wishing to hi jack I will start a new one . I have noticed that I am not alone

Thank you
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Re: Cranium

Postby concerned » Thu Feb 03, 2011 7:03 pm

1eye wrote:
concerned wrote:Intra is inside. Inter is between. Like internet (WWW) vs. intranet (LAN).


I'm not sure of the literal translations of the Latin prefixes, but an internet is a network of probably heterogenous networks. An intranet is anybody's guess. LAN stands for Local Area Network, from the fact that one of the first LAN media, the Ethernet, is distance-limited, and usually homogenous. A WAN (Wide etc. etc.) is Wide, and may even include what we have come to call "The" Internet.

The WWW is the World Wide Web, having nothing to do with networks, but what you do with them. You are using it now, and it is implemented using a hypertext language.

Maybe, like intermural games, an intranet is "between", but in this case it's your ears.


Whatever. I'm talking about the prefixes not computers.

http://www.merriam-webster.com/dictionary/intra-
http://mw2.m-w.com/dictionary/inter-
http://mw2.m-w.com/dictionary/extra-

http://en.wikipedia.org/wiki/Intranet

ALSO: I'm pretty sure my windows 98 home network (ethernet) kind of thing said "Intranet" on it a bunch of times, but I guess I never accessed it from another computer.
Last edited by concerned on Thu Feb 03, 2011 7:27 pm, edited 1 time in total.
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Re: Cranium

Postby concerned » Thu Feb 03, 2011 7:22 pm

fiddler wrote:Concerned says:
I don't see a majority reporting improvements, maybe 50/50 at best, but that's just a guess. Also, not many of these improvements seem to last very long.


Where are you getting your information from, Concerned? At http://www.CCSVI-Tracking.com of over 400 "liberated" participants, 64% are reporting improvement in quality of life, 74% reduced fatigue, and 59% improved mobility... altogether 81% report improved average symptoms. Looking at those who have been tracked for a longer period (9 months or more - there are 19 of us in that group), our symptoms have improved and, on average, remain improved. Do you have anything more than anecdotal evidence or "a vague feeling" to back up your claims that only 50% see improvements and "not many of those last"?

PS: As Concerned says, the right term should be intra-cranial (within the skull), not inter-cranial


I meant from this site, and it was just a rough estimate, no real deep thought put into it. But then you also have to factor in selection bias and the fact that most of the posters here are CCSVI "true believers" (except maybe for some who didn't have so good results).
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Self-selected

Postby fiddler » Thu Feb 03, 2011 7:35 pm

Yes, concerned, the people on CCSVI-Tracking (and on here) are self-selected. However, the numbers on that site are the most comprehensive we have from anywhere. Interestingly, they seem to roughly confirm what one American doc said a few months ago: 1/3 have no change, 1/3 have modest improvements and 1/3 have great improvements. Those proportions also seem to bear out for the people I know who have been treated. It will be interesting to see how that bears up over the long term. I am glad, however, that I'm not standing on the sidelines for this one.
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Postby concerned » Thu Feb 03, 2011 7:36 pm

concerned
 

Postby Cece » Thu Feb 03, 2011 7:38 pm

CCSVI is rooted in research done by Dr. Zamboni and published in peer-reviewed journals. My jugular stenoses were imaged on MRV and the flow disruptions measured on doppler ultrasound. It is offensive to refer to medical research and clinical findings as if they are religious in nature. I would however consent to calling you a "true disbeliever."
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Postby concerned » Thu Feb 03, 2011 7:47 pm

In all matters of faith, I'll gladly accept the title.
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Postby 1eye » Fri Feb 04, 2011 8:44 am

concerned wrote:In all matters of faith, I'll gladly accept the title.


Infidel!

:wink:
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Postby Billmeik » Fri Feb 04, 2011 11:09 am

this is the beginning of the 2.4 million dollar dance by these 'experts'. My question is if they didn't find ccsvi on their cis group, can we be sure they could find it on say a bunch of progressives? hmm methodology seems a bit weighted to mr technology which dr ziv recently pronounced useless.

btw my neuro is one of these experts and his mind, in a totally un-scientific way, is already made up.


subtle test. I wish dr haake was doing it.
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