CCSVI in Canada: Who/What/Where

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

Postby mangio » Thu May 13, 2010 1:54 pm

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Postby LisaAnn » Thu May 13, 2010 3:07 pm

I had my ultrasound done in March, in Barrie. They do not do transcranial Doppler. My scan was positive for CCSVI. I was told that if I had a positive scan I would be eligible for treatment when Dr. McDonald receives approval to do the angioplasty. They ultrasound technician's name is Angela and she has also spent time in Italy with Dr. Zamboni and his team. She is very experienced with the protocol. She told me she is doing up to 10 of these ultrasounds a day on people with MS.
No one knows if and when Dr. McDonald will be able to proceed with the angioplasty. I'm not aware of any waiting lists in Barrie.

I would highly recommend going to Barrie if you are looking for the ultrasound. They are a very professional and dedicated bunch!
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Postby newfie-girl » Thu May 13, 2010 3:47 pm

LisaAnn......thank you for sharing, I hope and pray that all these delays will get sorted out soon and the IR who are willing and qualified to do these procedures can get on with their work and we have a second chance at living normal lives again.

The waiting list I referred to was for the testing by ultrasound, which is Dec., so i guess I should get busy and get the requisition from my gp, but if I hear from New York, I will be heading across the boarder. Take care.......
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McMaster University Study

Postby Mossmanor » Thu May 27, 2010 11:52 am

McMaster University, in conjunction with St. Joseph's Hospital will be doing a study to determine what type of screening is most effective (MRV, Duplex Doppler Ultrasound, etc.)

Professor Ian Roger is running the program.
Mark Haake is the Director of Imaging
Dr. Paulseth is the director of the MC clinic at McMaster

They will study 100 MS patients and 200 healthy controls (after a pre-phase of 12/20 to establish procedures and measurement criteria)
The MS patients will be selected from people already in the MS clinic patient list
Major phase to start in July 2010
Preliminary results 1Q 2011, final results Aug 2011
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Postby broomdancer » Thu May 27, 2010 12:59 pm

Hi Newfie-girl:
My husband had a Doppler done at Port Perry Imaging and they found everything to be normal Jan 25th. They had only performed on less than a handfull of people at the time. They did perform the test in two positions (sitting and supine). However, we made another appointment for May 7th at Barrie Imaging where Angela found blockages. She is superb, really confident and knows her business. We are heading for Poland June 12th but if Barrie was to start the procedures my husband & I would definitely be comfortable recommending them.
Take care Diana
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Postby newfie-girl » Thu May 27, 2010 2:51 pm

Thank you Diana........Thank you for sharing your info with us and good luck in POLAND.

I have heard good things about Barrie, and it would be awesome to get liberated here in Canada, but as it looks now, I will be heading to Albany for testing and treatment early this Fall. Hopefully all will go as planned and there are no more disruptions/shut downs, this all seems so unfair to MSer's and has added such extra stress to our already very stressful MS lives.

Have a safe and successful trip......... :D Keep us posted!
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Postby jackiejay » Fri May 28, 2010 3:06 am

has anyone else been to Port Perry Imaging lately?.....sounds like they are perhaps not as well trained as technicians at Barrie's facility....(Barrie's people were trained in Italy with Zamboni, so that helps)....but maybe they have gotten better with time or more training
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Postby Hockeydad » Fri May 28, 2010 5:27 am

I too was imaged (is that now a word?) by Angela in Barrie. She was great. I believe that the Barrie clinic is sending more technicians to Italy for training. Dr MacDonald has assembled a team that is ready to go, when the Canadian gov't finally gets off its collective ass and lets them start the procedures. Oh, and yes, I have CCSVI! I don't think I've ever been happier to hear that I have blockages in my neck :D
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Testing Flase Creek

Postby BELOU » Fri May 28, 2010 10:11 am

Nobody has any idea when Flase Creek is going to perform the full, dangerous, unethical, unproven and possibly fatal 'liberation' procedure? I'm eager to take risks... Could it be early 2011 or more 2012?

Desesperated canadian.
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Postby Ibelieve » Thu Nov 04, 2010 5:46 am

My GP sent my referral to Barrie Imaging about 6 months ago at my request. I got a call last Wednesday from Barrie to say they had openings on both Thursday and Friday! As of mid-October, the procedure is no longer covered (cost is $250) so maybe there have been some cancellations (?). Angela, the technician said Dr. McKenzie is trying to get the money together to open a private clinic (apparently not holding his breath for the reinstatement of government funding!) though this could take a while. I, too, showed 5/5 blockages/abnormalities (you need 2/5 for a clinical diagnosis of CCSVI) so now it's "where to go from here?"
But, I would also highly recommend Barrie Imaging.
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Postby Hockeydad » Thu Nov 04, 2010 6:52 am

Do you mean Dr MacDonald?
RRMS since Feb , 2010. No drugs, just vitamins and exercise.
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Postby Ibelieve » Tue Nov 16, 2010 10:11 am

Yes - sorry - I meant Dr. McDonald
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