Negative False Creek MRV

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

Postby Billmeik » Thu Feb 04, 2010 6:52 am

I will be there during first week of March.
Perhaps you could be in contact with Dr. Cooperberg
regards
M.simka


clearly if he's already here I'm too slow.
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Postby mangio » Thu Feb 04, 2010 4:47 pm

Bill, Okay somegot wires crossed. New news from BNAC on CCSVI at UBC
might help with your decision.
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I am in False Creek now...

Postby chiromom1 » Thu Feb 11, 2010 2:35 pm

Well, I have just had my Doppler. The doctor did it, and spoke to me all the way through. He did not see any stenosis, some narrowing at jaw which is anotomically normal, he said. He did the test ling down. I asked him o repeat it sitting up, and he did. He founf that my jugular did not collapse upon sitting up (veins should collapse when sitting up), and he found an extra valve in my vein. He will send it to Dr. Simka and ask an opinion.

To me, it is obvious that there must be a blockage below the dilated vein area...I go for the MRV in an hour or so...

I don't know. They were very professional, and I could see everything, but now have more questions than answers.
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Re: I am in False Creek now...

Postby CureIous » Thu Feb 11, 2010 4:52 pm

chiromom1 wrote:Well, I have just had my Doppler. The doctor did it, and spoke to me all the way through. He did not see any stenosis, some narrowing at jaw which is anotomically normal, he said. He did the test ling down. I asked him o repeat it sitting up, and he did. He founf that my jugular did not collapse upon sitting up (veins should collapse when sitting up), and he found an extra valve in my vein. He will send it to Dr. Simka and ask an opinion.
To me, it is obvious that there must be a blockage below the dilated vein area...I go for the MRV in an hour or so...
I don't know. They were very professional, and I could see everything, but now have more questions than answers.


Thanks, keep us updated.

Mark
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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CCSVI False Creek

Postby LolaCat » Fri Feb 19, 2010 7:16 am

My husband just had his MRV and doppler scan done at False Creek. They found an attenuated left internal jugular vein throughout its course. They beleive this maybe congenital. Unfortunately no specific stenosis or occlusion could be seen, but due to the restricted flow they could not exclude the fact that one may exist. It is of particular interest that at the junction where Dr. Simka places his stents is where my husband had particularly weak flow.
We are now wondering what our next step should be.

Looking for Answers,
LolaCat
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Re: CCSVI False Creek

Postby happy_canuck » Fri Feb 19, 2010 3:44 pm

LolaCat wrote:My husband just had his MRV and doppler scan done at False Creek. They found an attenuated left internal jugular vein throughout its course. They beleive this maybe congenital. Unfortunately no specific stenosis or occlusion could be seen, but due to the restricted flow they could not exclude the fact that one may exist. It is of particular interest that at the junction where Dr. Simka places his stents is where my husband had particularly weak flow.
We are now wondering what our next step should be.

Looking for Answers,
LolaCat


LolaCat,

It's funny that we wish for bad news with these scans, isn't it? I am headed to False Creek in March and I have been wondering what will I do if everything comes back negative for CCSVI. I read another person's report from FCSC that used the word "attenuation" and this could very well be just not documenting CCSVI in the same way as others doctors have described it. I know it's not a stenosis, but if attenuation impeded flow, wouldn't that lead to venous insufficiency?

FCSC is going to Italy next month to visit Zamboni. I would be in touch with them after they return and see if they want to re-read your husband's scans or if they have any news of whether attenuation is something Zamboni also found and treated.

Sandra
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />
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Postby k6ristin » Fri Feb 19, 2010 3:53 pm

Would you say False Creek is "good" at these scans? Are they following Zamboni's Protocol, setting their 3T MRA to his settings? I am trying to decide between Seton Imaging in Buffalo, or False Creek in BC. Also been in contact with a "new" place in Poland, and waiting for my doctor to get trained. He is supportive, but not ready yet. I love Vancouver! Thanks.
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