CCSVI in Canada: Who/What/Where

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

Postby TFau » Fri Jan 22, 2010 10:44 am

I just spoke to the people in Barrie and they do not do the transcranial ultrasound - so, even if one gets a negative result there, there is another avenue to follow.

I believe that stenosis for cheer's husband didn't show up until they did a transcranial. Someone correct me if I'm wrong!

Theresa
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Postby broomdancer » Fri Jan 22, 2010 10:52 am

TFau:
Thanks for reporting back so quickly and keep us posted. Good Luck.
Diana
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Having an apointement with A good Radio-interv in Montreal!

Postby babiezuique » Fri Jan 22, 2010 11:19 am

There is a way!

You have to get a paper from your gp. It is possible. I'm on the waiting list to meet a very good guy her in montreal. The man is the director of the Research in radiology of the Univerity of Montreal.

Go get your paper....
there is ways....
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Postby broomdancer » Fri Jan 22, 2010 11:46 am

babiezuique:
Thank you for the info and following the Dopplor we will be in touch with our GP. Have you any idea how long the waiting list is and do you have an e-mail address for the Dr. and/or may I have his name? This is good news!
Regards Diana
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Postby babiezuique » Fri Jan 22, 2010 11:50 am

He his radiologist interventionist.
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Postby jay123 » Sun Jan 24, 2010 1:50 pm

The following article talks about Kaleida Health (large Buffalo hospital system) and their business plan where they are advertising in Canada for patients (the ones that can afford it) to use their services instead of waiting in Canada.
http://www.buffalonews.com/home/story/919578.html
Could I suggest you guys start emailing the business manager mentioned in this article and ask them to start getting their interventional radiologists and their stroke clinic involved in treating CCSVI, it might work out!
In my opinion though, be careful the Jacob's Clinic is located in one of their hospitals so I'd be specific in the letters that you aren't looking for testing, you want procedures!
Good luck!!!
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Postby broomdancer » Sun Jan 24, 2010 2:20 pm

Jay123:
Thank you for the info, we will definitely look into it.
Regards
Diana
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Postby TFau » Mon Jan 25, 2010 7:35 am

TFau wrote:I just spoke to the people in Barrie and they do not do the transcranial ultrasound - so, even if one gets a negative result there, there is another avenue to follow.

I believe that stenosis for cheer's husband didn't show up until they did a transcranial. Someone correct me if I'm wrong!

Theresa


CORRECTION and EDIT: I just read in another post that cheer's husband did not have a transcranial doppler. Rather, it was an MRV that detected his stenosis. Sorry about that!
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Postby TFau » Mon Jan 25, 2010 7:37 am

jimmylegs wrote:heard a rumour there's something stirring in toronto.. can't confirm just yet.


Hi Jimmylegs:

Have you heard anything else about what's stirring in Toronto? Or was it actually the studies on children that you heard?

Thanks,
Theresa
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Postby dlb » Thu Jan 28, 2010 12:03 pm

I got an email update that announced that Saskatoon City Hospital is receiving some funding for MS research including CCSVI.

I'm adding a link for a very moving Youtube video that is on their campaign website, so I hope I get the link installed for all to see:

http://www.youtube.com/watch_popup?v=Cy004eeHTLw#t=17

I'm adding the news alert that I rec'd as well:

http://www.marketwire.com/press-release ... 108090.htm
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SCREENING

Postby BELOU » Thu May 13, 2010 1:01 pm

Please give me a place where I can have a doppler and MRV in Canada? I've been calling everywhere and found nothing except False creek which is overlaoded.

Thanks.
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Depends

Postby fiddler » Thu May 13, 2010 1:15 pm

Belou, I haven't been following the search for CCSVI assessment sites in Canada, but besides finding some place that will do an MRV and/or doppler, you also need to make sure that they know what they are supposed to be looking for.... False Creek had a lot of false negatives until Dr. Simka showed them how. Dr. McDonald in Barrie was trained by Dr. Zamboni, and that is much closer to you (if you're in Quebec). He's been stopped from doing "liberations", but I assume he can still do assessments... if he isn't overbooked, as well.
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Barrie

Postby BELOU » Thu May 13, 2010 1:25 pm

They are booked until the end of the year. Do they scan all the veins, including the azygos? I which I could have the whole thing MRV + Doppler but I just can't find a place. Vancouver is fine but they are booked until the end of the year. I talked to the Kuwait IR and he would do the whole thing for 7000$. I just want a freaking diagnostic (MRV + Doppler) that's all. Any ideas? On your side everything is still fine?
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Ideas

Postby fiddler » Thu May 13, 2010 1:59 pm

Everything is fine with me... no big improvements yet... but it took 8 years to get where I am, so I need to be patient. Anyway, even NO improvement (but no worsening) would be a big success.

Belou, do you already have a treatment organized with someone? I went to Poland without any assessment ahead of time because I didn't trust anyone here to do it right at the time, and the numbers look like almost everyone with MS has CCSVI. For me it's farther to Vancouver than to Poland, and getting it done by someone who you aren't sure knows what they're doing is a waste of time and money, I figured. If you could get into Barrie, that would be worthwhile, though... besides getting a pretty accurate diagnosis, maybe that would put you on his list for treatment, if he is allowed to start again.

...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby newfie-girl » Thu May 13, 2010 2:29 pm

I called the Barrie clinic today and the receptionist informed me that they are booked until Dec, they only do doppler ultrasound for testing, and no treatment at this time. I am somewhat hesitant about just the doppler ultrasound because as Dr. S has said many times, the venogram is the "gold standard " of diagnosing CCSVI.

If anyone had testing at Barrie lately, would you please sure your experiences, and confirm the type of equipment they are using and if they had positive results from the ultrasound. :) Thanks for any info you can share..... I believe Mango said Dr.MacDonald was her doctor......has she been tested or treated :?:
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