False Creek ( Vancouver ) announces ccsvi study

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

False Creek ( Vancouver ) announces ccsvi study

Postby garyak » Fri Sep 24, 2010 5:57 pm

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Postby Cece » Fri Sep 24, 2010 7:48 pm

I think it is an imaging only study. They are accepting applicants until Sept 27 at 5 pm.

Application form is here: http://tinyurl.com/37crwmq

They will take 100 people with MS and 100 controls without MS.

I'm more excited about this imaging study than the MS Society ones! These guys have some experience in CCSVI.
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Postby MrSuccess » Sat Sep 25, 2010 12:09 am

came upon some interesting information regarding Dr. Chambers . :idea:

He was involved in doing a study that resulted in patient reported outcomes in six popular elective surgery's ..... over 5 different hospitals ..... and many doctors . [ CMAJ Sept. 3rd 2002 ]

This caught my eye :

Quote : We were disapointed by the lack of interest expressed by almost half of the surgeons in recieving patients' self-reported outcome information . This lack of interest suggests that many are not yet aware of the recent advances in the discipline of HRQOL measurement .

Some surgeons may have difficulty accepting the evidence that patients' self-reported HRQOL is a more valid outcome measure than their own impressions of outcomes .

Unquote .

HRQOL means health-related quality of life .

So it seems SOME doctors are willing to listen to their patients opinion.

This is what CCSVI is up against . And as it is a new medical condition and discovery ........ the hill to climb will be almost vertical .

I am confident Dr. Godley has appointed the right man for the job.





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Postby Mike56 » Sat Sep 25, 2010 10:02 am

I signed up online yesterday.

I'm pretty excited about it too, Cece. While I doubt I'll be chosen (i'm 54) just knowing this study is being done gives me hope, and signing up makes me feel like I'm at least trying.....

Thanks for the post garyak.

Good info MrSuccess.

Mike
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Postby sbr487 » Sat Sep 25, 2010 10:06 am

Cece wrote:I'm more excited about this imaging study than the MS Society ones! These guys have some experience in CCSVI.


Don't pin your hopes on the 7 "studies" MSS has sponsored. I think Savioe carefully avoids naming any other research that have taken off other than those 7. I don't think it is without a reason ...
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck
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Postby Cece » Sat Sep 25, 2010 11:39 am

sbr487 wrote:Don't pin your hopes on the 7 "studies" MSS has sponsored.

Yeah, this is a good point. My expectation with those studies is that the rumor (that they were chosen to disprove CCSVI, not prove it) is true. What I am looking forward to are studies that come out with pro-CCSVI results.
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Postby Blaze » Sat Sep 25, 2010 12:25 pm

It's disappointing only those who have had MS for less than 10 years are to be included in the imaging study. I think they could learn a lot from "oldies' who have had MS for much longer.

I would think studying the veins of people who have had MS for both shorter and longer periods of time would provide far more information and knowledge.
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Postby foreignlesion » Mon Nov 01, 2010 11:23 pm

Just got the call today!!

Very excited!

I'll post an update when I get the e-mail.
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Postby PCakes » Tue Nov 02, 2010 9:34 am

foreignlesion wrote:Just got the call today!!

Very excited!

I'll post an update when I get the e-mail.


Wow! will you travel from Saskatchewan? good job!
My scan is done.
The analysis will be blinded and you can expect to get a copy of the results once everything is done. They are being very careful. A promise of timeline was not yet available.
The False Creek team is fantastic!! All involved are working long hours into the night to get this done. The optomism and sincerity is palpable.
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Postby Jugular » Tue Nov 02, 2010 2:32 pm

I wonder if they will be getting Dr. Haake to do the blood flow analysis? When I had my imaging done there I got a short and facile MRI report from a staff radiolgist and a detailed report from Dr. Haacke weeks later.
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Postby PointsNorth » Tue Nov 02, 2010 8:28 pm

FCS forwarded my MRI/V results to Haake too and I ended up trading emails with him and his team!

Doppler done in Albany the day after procedure contained findings measured against Zamboni criteria which I liked. I will ask FCS to present data in a similar fashion when I return in January for 3-month follow-up.

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Postby Lyon » Wed Nov 03, 2010 2:30 am

.
Last edited by Lyon on Sun Nov 20, 2011 5:29 pm, edited 1 time in total.
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Postby concerned » Wed Nov 03, 2010 8:16 am

meh.
Last edited by concerned on Wed Nov 03, 2010 9:29 am, edited 1 time in total.
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Postby PCakes » Wed Nov 03, 2010 9:25 am

no no no no no...please don't start this again... 8O
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