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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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jewelia
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PostPosted: Mon Dec 14, 2009 7:47 pm 
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Much appreciated Fiddler!
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jewelia
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PostPosted: Mon Dec 14, 2009 8:04 pm 
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Dear Simon,

The same woman who has arranged the testing at False Creek Surgical Centre in Vancouver is also setting this up in Gatineau. You can call her toll free - her name is Yaseem Sayeed. She can expain it to you more and answer any questions you may have.

Tel: 1-877-871-4315( Toll Free) , 604-575-4316
Fax: 778-574-7253
Email: ysayeed@surgicaltourism.ca
Web: www.surgicaltourism.ca

best regards,
Julia
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fiddler
 Post subject: St Mary's in Montreal
PostPosted: Tue Dec 15, 2009 8:42 am 
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Folks, there is no CCSVI. Must have been a misunderstanding on someone's part (wishful thinking?). Anyway, here is their reply:
Quote:

Unfortunately, there is no formal CCSVI study currently being conducted at St. Mary’s.
What you heard about was in fact a one on one exchange between a patient and a dedicated family physician with an interest in the topic (from what I have been able to gather).

Several recommendations:
1) Speak to your own family physicians to see whether he/she is familiar with the work currently being conducted in the field. Perhaps he/she can help you book an appointment for a scan, and can help interpret results - or can link you to someone who can.

2) I believe there is currently a formal study being conducted at McMaster (http://www.ctv.ca/servlet/ArticleNews/s ... 1/20091121) - you may try getting in touch with someone there. I unfortunately don’t have any additional information.

3) You may try to contact the vascular lab (for imaging/scans of the vascular system) at St. Mary’s hospital (with Michael Baranyai) – but I am afraid they may not have much more information for you. 514 345 3511 ext 3682.

Wishing you both the best,

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


Guess us easterners will have to look elsewhere.

...Ted

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fiddler
 Post subject: Michael Baranyai
PostPosted: Tue Dec 15, 2009 9:00 am 
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OK, being the dogged person I am (stubborn?), I decided to make one more call, to Michael Baranyai. Very luckily (he said), I caught him at his desk. In fact, his lab IS doing the doppler and MRA (angiography, which he says is the same as venography) and though he has lots of experience with imagery (since 1986), he is on a steep learning curve with respect to CCSVI, doesn't assume that he has the expertise of Haacke, Zamboni, Dake or Simka, but is willing to do the assessment for me sometime after Christmas. I need a referral from my doctor here in Fredericton.

By the way, I asked if he wanted me to remove his phone number from my posting, but he said it was OK because his phone number is already out there. Won't put out his pager number, though. :)

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My blog: www.my-darn-ms.blogspot.com
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C3Glo
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PostPosted: Tue Dec 15, 2009 9:10 am 
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Fiddler ... This is good news! So glad you were stubborn & made the call!!!!
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Billmeik
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PostPosted: Tue Dec 15, 2009 9:41 am 
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if false creek did 20 scans last week thats 40 grand. Someone must know someone who got results with a blockage? If the jugs arent clogged then the a vein in the back?
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C3Glo
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PostPosted: Tue Dec 15, 2009 9:51 am 
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Billmeik wrote:
if false creek did 20 scans last week thats 40 grand. Someone must know someone who got results with a blockage? If the jugs arent clogged then the a vein in the back?


I posted something on the UBC CCSVI Facebook page to see who else has gone to FCSC ... The only person I have been in contact with that has was Dawna.

I am interested to hear from others who have gone too!
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Billmeik
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attenuated
adj. made thin; tapered; reduced; weakened


so a mild attenuation is a milld stenosis kinda.

The first studies that tried to replicate zamboni got 10%.

I would say we're paying for those guys to solve some really hard anatomy problems..
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C3Glo
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PostPosted: Tue Dec 15, 2009 11:42 am 
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This was just posted on the CCSVI at UBC Facebook page :

"CCSVI at UBC MS Clinic - Information and Support CTV is apparently going to UBC to interview doctors regarding CCSVI today. I don't have confirmation which broadcast to watch, but it involves Avis Favaro, the original W5 reporter who went to Italy. I have my DVR set to record all CTV news broadcasts today!"

One of the ladies on the FB site is going to be a part of the interview & says it will be on the National News.

Check it out:
http://www.facebook.com/#/pages/Victori ... 940?ref=mf
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C3Glo
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PostPosted: Tue Dec 15, 2009 11:44 am 
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This was was in the Vancouver Sun today regarding the FCSC:

http://www.vancouversun.com/Italian%20r ... story.html
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C3Glo
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PostPosted: Tue Dec 15, 2009 11:49 am 
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Another post from the CCSVI at UBC Facebook page ... just posted now!

Quote:
CCSVI at UBC MS Clinic - Information and SupportI just heard from the CTV producer that they may run two stories today on MS – one on the UBC research and one on False Creek doing these scans.

http://www.facebook.com/#/pages/Victori ... 6391808733
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C3Glo
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PostPosted: Tue Dec 15, 2009 12:13 pm 
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Check out CBC radio for their Daily Audio Feature on Zamboni's research ... it looks like this may change daily so I am not sure how to specifically go to the Audio link ...

Quote:
Dr. Samuel Ludwin, a professor of neuropathology at Queen's University who's been researching Multiple Sclerosis for over 30 years, discusses the new theory and treatment for the disease proposed by Dr. Paolo Zamboni, a professor of medicine at the University of Ferrara in Italy.



http://www.cbc.ca/ontariomorning/
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C3Glo
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PostPosted: Tue Dec 15, 2009 12:18 pm 
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Ok ... one more thing from CBC today ...

http://www.cbc.ca/health/story/2009/12/ ... ffalo.html
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Billmeik
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what if this noise has allowed msers to be taken for thousands of dollars for pictures that 'may' or may not show the problem?
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Billmeik
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PostPosted: Tue Dec 15, 2009 12:52 pm 
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what if this noise has allowed msers to be taken for thousands of dollars for pictures that 'may' or may not show the problem?
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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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