could not having CCSVI mean?

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

could not having CCSVI mean?

Postby robbie » Fri Jan 22, 2010 7:46 am

could not having CCSVI mean that you don't have MS?
Had ms for over 19 years now.
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Postby Billmeik » Fri Jan 22, 2010 8:51 am

It could but the imaging would have to be done by someone who knows this stuff. There are a lot of false negatives being handed out by people who dont follow the protocols correctly.
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Postby cheerleader » Fri Jan 22, 2010 9:10 am

Hey Robbie...
nice to see your pic. Hope you're doing OK in the frozen tundra...how's the lake looking?

We just don't really know how may MSers are going to have CCSVI, preliminary numbers look around 90%, but having the Jacobs research numbers soon may help elucidate the pic. There may be a subset of folks with MS and no CCSVI...more research will tell.
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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby LR1234 » Fri Jan 22, 2010 9:33 am

I would just like to add that my MRV and my Doppler were not that clear when it came to CCSVI. Only a subtle "might be" problem was seen, when I had the venogram the problem was very obvious and there was no question about my left jugular being occluded.
So even if something looks normal there may be serious issues still.
I hope they take this into consideration in the studies
Last edited by LR1234 on Fri Jan 22, 2010 12:12 pm, edited 1 time in total.
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Postby robbie » Fri Jan 22, 2010 9:35 am

Hi Cheer i think i'd rather have our weather than yours right now and i mean for now only (winter sucks) The reason i asked this question is i remember the number being mentioned in the beginning was 100 % so i thought this might be a good way to know if you have ms or not. Maybe in the future it will be. For anyone with ms you have got to be curious as hell to see if you have CCSVI or not.I asked Bromley this on the main board after he insulted you but i guess i am not worthy of his reply.
Had ms for over 19 years now.
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Postby robbie » Fri Jan 22, 2010 10:10 am

Hi LR1234 would you say then that having an MRV done by a person who knows what to look for wouldn't be enough to tell you if you had CCSVI or not
MRV and my Doppler were not that clear when it came to CCSVI.
Had ms for over 19 years now.
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Postby cheerleader » Fri Jan 22, 2010 11:06 am

robbie wrote:Hi Cheer i think i'd rather have our weather than yours right now and i mean for now only (winter sucks) The reason i asked this question is i remember the number being mentioned in the beginning was 100 % so i thought this might be a good way to know if you have ms or not. Maybe in the future it will be. For anyone with ms you have got to be curious as hell to see if you have CCSVI or not.I asked Bromley this on the main board after he insulted you but i guess i am not worthy of his reply.


You're right, Robbie- Dr. Zamboni found CCSVI in 100% of the MS patients he tested in that first paper. This could be because he only used patients who were definitely clinically defined MS, or because his doppler protocol is so specific (we still can't find places to do the transcranial doppler!) or just a fluke. I know Dr. Dake was seeing close to 95% in self-referred MS patients, and there have been reports of negatives in MS patients. I think the Jacobs research will shed more light.
Yeah, bromley likes to pop in and make his snide proclamations and then go away again. Whatever. thanks for being chivalrous :)
I like your summers much more than LA's, that's for sure-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Leonard » Fri Jan 22, 2010 11:51 am

I have the problem but then the other way around. I was diagnosed with RR-MS 6 years ago. So you would expect me to have CCSVI. I met prof. Zamboni in November and indeed he diagnosed me with CCSVI Pattern C (stenosis in both jugular veins) using the echo-Doppler measurement (=speed/flow).

This week an angiography was made of my jugular veins in a local hospital. Both veins were found to be normal/quasi-normal. The outcome was a big disappointment for me.

Does anyone here know about the possibilities/impossibilities of using angiography as an instrument for diagnosis of CCSVI? For instance is valve malformation that could give rise to reflux visible in all cases? I read about echo-Doppler (=mainly speed/flow) and MRV according to the Haacke protocol but have not found angiography for diagnosis of CCSVI.

Thanks for all info you can give.
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Postby ozarkcanoer » Fri Jan 22, 2010 1:09 pm

I've seen several posts from people who have been imaged and no CCSVI discovered, like Leonard !! This scares me. I have put so much hope into CCSVI that if I get a negative scan I will be devastated. But I am going to see a neuroradiologist Feb 8. His nurse told me that they could order a scan for me. But since I will be the first in my city (that I know of) to be tested for CCSVI, what are the chances for a false negative ? It is one thing to be a pioneer and be successful, but a whole other thing to be a pioneer and be shot down. Unfortunately I have a whole lot emotionally invested in this.

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Postby whyRwehere » Fri Jan 22, 2010 1:12 pm

Also Robbie,
If you do have CCSVI, you might still be told you don't have MS, which is what may be happening with my husband....
Bromley who? (pompous and arse come to mind).
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Postby CureOrBust » Fri Jan 22, 2010 8:23 pm

cheerleader wrote:....or because his doppler protocol is so specific (we still can't find places to do the transcranial doppler!) or just a fluke...
If you are looking for a sonographer that is capable of performing TCD (the main issue most have with Zamboni's protocol), I really suggest you speak to someone who deals specifically with Stroke. They do ultrasound of the cranium as standard practice.
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Postby Leonard » Sun Jan 24, 2010 2:02 am

Dear all,

The facts in my posting here above were not complete. In fact, it appears there is a narrowing of the dominant left jugular vein. As soon as I know more, I will let you know.

Leonard
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