MRV & Doppler Ultrasound in Canada?

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

St Mary's study

Postby fiddler » Sun Dec 13, 2009 7:54 am

Jaguar, is it possible to just call the hospital and ask to get tested? I assume they are using the known protocols for CCSVI. I go to Poland in April, but it might improve my comfort factor if I had confirmation of CCSVI beforehand.
...Ted
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Postby Jaguar » Sun Dec 13, 2009 8:40 am

Fiddler
I got into the St Mary's study through my GP - she called Michael Baranyi (he's the technician) and they had just started the study so he said come right over. I actually went twice in a week so he could adjust his protocol. On Friday when I left, he had a long line of non-MS subjects going in for scans.

He found significant stenosis n my left jugular and major issues in my vertebral veins.

Now looking for some confirmatin via MRV.
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Postby Chilcotin » Sun Dec 13, 2009 8:01 pm

C3Glo wrote:WOW!!!! This information is AMAZING for me ... I live so close & I will call on Monday & see what I find out! Thank you so much for passing on this info & your time! I will post any info I find out when I call ... I am looking forward to getting these scans done ASAP!!! Thank you again!



There is alot of information C3Glo on this Facebook Group (CCSVI with a BC focus).

<shortened url>

Hope this helps!
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Postby C3Glo » Mon Dec 14, 2009 12:37 am

Thank you so much Chilcotin ... I actually just found this group yesterday & joined it! I have also been in communication with someone in that group who went last week to FCSC for the MRV.
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MRV scan FCSC

Postby PCakes » Mon Dec 14, 2009 9:12 am

Good morning C3Glo... I am new to this site so forgive me if I am not following proper chat etiquette. I see that you are in conversation with someone who has already had their scans performed at FCSC and as I am scheduled for this Thursday coming, I am wondering if you or anyone have any word on any results/experiences that you might be able to share?
Thanks much,
P
Last edited by PCakes on Mon Dec 14, 2009 9:56 am, edited 1 time in total.
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Postby Billmeik » Mon Dec 14, 2009 12:12 pm

I just got called by false creek for a scam tomorrow and I backed out til I can hear from other people on if it worked
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Postby Billmeik » Mon Dec 14, 2009 1:16 pm

so I joined facebook and heard first hand reports about false creek. Other than a mild attenuation they saw no ccsvi. I might have saved money by stalling...
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False Creek

Postby fiddler » Mon Dec 14, 2009 1:24 pm

"Other than a mild attenuation they saw no ccsvi."

Billmeik:

So, if I'm understanding this right, False Creek has found NO CCSVI in MSers? Or did you mean something else?
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Postby C3Glo » Mon Dec 14, 2009 1:33 pm

I PM'd a lady that had the MRV done at FCSC & she said she did not get the doppler ultrasound because she felt that they would not know what they were doing as. From my understanding, it is difficult to do & not many know what they are doing, so good choice on her part I think. She also felt they were competent with the MRV & she was glad that she had done the scan. She is trying to get stats from FCSC to see what kind of results they are getting. at this point I am holding off till they do some more. Eventually I would like to get an MRV done, but after they have done enough to ensure I will get the best possible result ... regardless of what that the outcome may be.
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Postby Billmeik » Mon Dec 14, 2009 2:42 pm

just on the one mser on facebook.

dunno about others. They said they'd done 20.
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CCSVI Study in Montreal?

Postby jewelia » Mon Dec 14, 2009 2:55 pm

Hello Jaquar,

wow, this is good news! I haven't heard about this before. Could you please post information regarding who to contact regarding taking part in this study? I live in Toronto, so it's not too far to travel.

Thank you so much.

Julia
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Initial reply from St Mary's

Postby fiddler » Mon Dec 14, 2009 3:39 pm

Jewelia et al,
I received this e-mail this morning:
Good morning

Please see below for an additional inquiry from MS patient regarding possible involvement with study in the new year.
Again, I am not aware of this study - would you kindly direct him to the appropriate contact?
I noticed that this study has been discussed on a online forum (http://www.thisisms.com/ftopicp-80689.html) - I believe this may be why we are getting all these inquiries.

Thanks,

--
Manon de Raad
Project Coordinator
Department of Clinical Epidemiology & Community Studies
St. Mary's Hospital Center
Tel.: (514) 345-3511 Ext 3074


Obviously, they have been deluged... lotta folks must be reading this thread. If/when I get a reply from someone there who knows what is going on, I'll post it.
Dx SPMS in 2004.  Liberated 29/04/2010.
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Gatineau, QC

Postby Simon28 » Mon Dec 14, 2009 6:06 pm

Jewelia,

I read your post on the scans being done in Gatineau, Qc in the begining of 2010. Do you have more info? Where did you learn this? Thanks very much.
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My MRV results

Postby Dawna » Mon Dec 14, 2009 6:29 pm

It's funny.. reading this forum and then realizing that people are talking about me!

I'm not sure I can provide any more information than what has been passed on here. I have still not had any response back from the Vancouver clinic as to their success rate with finding CCSVI. I have NOT heard back from my neurologist after sending my MRV results to him 5 days ago. My results stated that I had some attenuation of the left jugular vein at the C1 level, but until I can get that clarified, I don't really want to assume what that means. They did say however, that I did not have any notable stenosis. But, what is their criteria for diagnosing stenosis? Is it a strict criteria? I wonder if there is something there in my scan, but if it is below a certain percentage, maybe it won't be considered stenosis? Lots of questions.

I have a reporter coming in the morning to interview me (gulp!) so I pray that I can speak for many in how MS affects our lives, and what this research means to us.. and that it cannot come soon enough!

Humbly,
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Postby C3Glo » Mon Dec 14, 2009 6:39 pm

Thanks Dawna for getting this message out there for all of us! It's awesome!!!! If you finally do get any info from FCSC I'd love to hear about it!
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