False Creek Centre in Canada RE-testing people.

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

Postby Johnson » Sun Jan 03, 2010 3:19 pm

You two are funny! (Lyon/cheerleader)
My name is not really Johnson. MSed up since 1993
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Postby magoo » Sun Jan 03, 2010 6:28 pm

Wow, I think Bob has a crush on Cheer :) He hangs on your every word. :roll:

I can't wait until we have more evidence from the ongoing studies so that we can put all of this to rest. I'm exhausted by all of the non-doctors debates.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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false creek

Postby mangio » Sun Jan 03, 2010 11:14 pm

I called False Creek to ask if people were being called back and the
intake person explained yes, but only two people have had to return for further scanning.
I queried as to the reason they were asked to return and she said that
they have new software. New appointments can be booked for late January. Let's hope the kinks are out of the system and the
results for the January appointments add credence for all that is hoped.

By the way, even if only 10pc of the 4 or 5 million people afflicted globally by
MS could be helped by this new science/procedure, you all are to be
held in the highest regard for this bold, brave and brillant path you
have directed the medical world on!


mangio
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Re: false creek

Postby happy_canuck » Mon Jan 04, 2010 1:09 am

mangio wrote:I called False Creek to ask if people were being called back and the
intake person explained yes, but only two people have had to return for further scanning.
I queried as to the reason they were asked to return and she said that
they have new software. New appointments can be booked for late January.


mangio,

I think False Creek is re-scanning more than two, but maybe she gave you numbers for just the ultrasound or just the MRV scans. In any case, it's great news that we have interest in a facility, albeit private, to get up-to-speed with this diagnostic testing.

Some of those people called back for re-scanning post about their experiences on the CCSVI at UBC Facebook page (link follows my signature).

~ Sandra
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />
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Postby Billmeik » Mon Jan 04, 2010 8:04 am

not to be negative, but I've had a few doctors and researchers look at this page and ALL of them pointed toward medical inaccuracies in the stickies. They were all friends of mine and didnt want to pop my balloon but they did want to at least let a little air out...

So everybody wants more science to be done. Some of us might actually pay False Creek to learn.
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Postby hiawatha » Mon Jan 04, 2010 8:28 am

Billmeik wrote:not to be negative, but I've had a few doctors and researchers look at this page and ALL of them pointed toward medical inaccuracies in the stickies. They were all friends of mine and didnt want to pop my balloon but they did want to at least let a little air out...

So everybody wants more science to be done. Some of us might actually pay False Creek to learn.


While False Creek is testing, is there any where that will use those tests to do treatment? I think the first step is to convince a cardio surgeon or two that there are real benefits to patients that have the stenosis repaired. Unfortunately that will take time, particularily with this medical system in this country where entrepreneurial and innovative thinking is suppressed at all cost. Tired of waiting, I'm looking to Poland for treatment.
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Postby CureIous » Mon Jan 04, 2010 9:25 am

Billmeik wrote:not to be negative, but I've had a few doctors and researchers look at this page and ALL of them pointed toward medical inaccuracies in the stickies. They were all friends of mine and didnt want to pop my balloon but they did want to at least let a little air out...

So everybody wants more science to be done. Some of us might actually pay False Creek to learn.


Well are they shy or what? lol. Bring em on in, there's no balloons in here that can't be burst. The foundation is still strong, even though the minutae is being worked out day by day.
Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby happy_canuck » Mon Jan 04, 2010 9:32 am

hiawatha wrote:While False Creek is testing, is there any where that will use those tests to do treatment? I think the first step is to convince a cardio surgeon or two that there are real benefits to patients that have the stenosis repaired.


hiawatha,

I agree we need to keep all options open, whether we are from Canada or anywhere else. No country seems to have jumped on board yet, even ones with public systems. I agree with billmeik that if a number of people pay for scans and present this evidence to vascular surgeons, we will start getting treatment in Canada. If a surgeon sees a vascular problem, I have confidence they will fix it.

If enough of us get our scans done that show evidence of CCSVI, it will lead to publicly-funded testing, but I don't see that happening until UBC reports its Phase I results in July 2010, at the minimum.

~ Sandra
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />
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Postby Vhoenecke » Tue Jan 05, 2010 2:21 pm

A friend of mine had her MRV in Buffalo and it was shown as negative. When given to someone that could read the scans properly the stenosis has been found. We and the technicians are all new to this testing etc. Of course what will be so obvious in 10- 20 years is all new now. Same with a lot of technology. Look at computers and Internet 20 years ago. All will be fixed and found I just pray it is in my lifetime. My dad died from complications of MS. He was born in 1932 he said that his generation saw the biggest change. Steam to gas engines, transportation, computers, penicillin, and the list goes on. My generation 1964, will witness the biggest advances in MS. My children will not have to worry about getting the disease. Mine will not advance much more. We will do this. :lol:
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Postby lilsis » Tue Jan 19, 2010 3:50 pm

my sister had a negative ultrasound from false creek today. waiting for the mrv results... are you able to provide any info as to who else is interpreting the scans?
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Postby dunkempt » Tue Jan 19, 2010 4:17 pm

If enough of us get our scans done that show evidence of CCSVI, it will lead to publicly-funded testing, but I don't see that happening until UBC reports its Phase I results in July 2010, at the minimum.


I would say, "I don't see anyone *even discussing that seriously* until..."

There is still the matter of the turning the huge ship of established procedure and funding around.
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Postby beerduff » Tue Jan 19, 2010 8:23 pm

If enough of us get our scans done that show evidence of CCSVI, it will lead to publicly-funded testing, but I don't see that happening until UBC reports its Phase I results in July 2010, at the minimum.

Hi happy_canuck
Do you have any inkling as to the time frame for testing to begin at UBC.
I have sent in a donation, one poster on your Facebook page asked if the required amount of donations was met, if not how short of funding are they at.
I certainly could send in a second donation.
Thank you for any insight you might have.
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Postby happy_canuck » Tue Jan 19, 2010 9:49 pm

beerduff wrote:If enough of us get our scans done that show evidence of CCSVI, it will lead to publicly-funded testing, but I don't see that happening until UBC reports its Phase I results in July 2010, at the minimum.

Hi happy_canuck
Do you have any inkling as to the time frame for testing to begin at UBC.
I have sent in a donation, one poster on your Facebook page asked if the required amount of donations was met, if not how short of funding are they at.
I certainly could send in a second donation.
Thank you for any insight you might have.


Hi beerduff,

I asked Fatima Hassam, who is listed as the development officer for UBC Hospital, for an update on the total last week. She didn't give it to me yet, but she did contact me today in response to my other email, which was about a joint fundraising project. So I will ask her for an updated total again!

There are two groups who fundraise for UBC's study, the Faculty of Medicine (Fatima is an Associate Director):
http://www.supporting.ubc.ca/priorities ... icine.html

and

the VGH and UBC Hospital Foundation:

https://www.worldclasshealthcare.ca/hom ... 151049-320

so getting one total raised is going to take some work. But I am in touch with both, so I hope to find out soon.

As an update to my earlier post, several people have been told the study will not get underway in February like I thought. They are hosting the Italian and Polish researchers here for a meeting in February, so it looks like they are still getting organized.

Cheers,

Sandra (happy_canuck)
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />
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Postby taxi » Wed Jan 20, 2010 6:14 am

Just referring back to Bob's post on the previous page where he says that CCSVI is called a "theory" because it's not proven. I hope I'm not being pedantic when I say that technically (in science) EVERYTHING is a theory. The word "theory" has a specific definition that is different to what non-scientists expect.

Ideas start out as hypothesis and become theories when a way of falsifying them is found. You can never "prove" a theory because there are an infinite number of tests you could perform - to "prove" CCSVI causes MS would you have to test every living human (and perhaps every human who has ever lived). Clearly this is impossible, so in practice, you can only fail to disprove this theory.

The theory can be disproved by finding a single patient with CCSVI who doesn't have MS. The problem is that (a) CCSVI is a condition of cranial venous haemodynamics, a field which has been "poorly studied" (Dr Z's words) and therefore the testing procedures are new and require operator training; and (b) There does not appear to be a clear physiological definition of MS (correct me if I'm wrong). This means that it's going to be easy to falsify the theory simply through incompetence, or malice.

Unfortunately, for these reasons the CCSVI-causes-MS theory is likely to be contentious for years to come, even if it is correct - and I certainly hope it is, since I would like to be known as the guy who renamed MS to mean "Multiple Stenoses" :) (and got his wife back)
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Postby jay123 » Wed Jan 20, 2010 7:42 am

taxi wrote:Just referring back to Bob's post on the previous page where he says that CCSVI is called a "theory" because it's not proven. I hope I'm not being pedantic when I say that technically (in science) EVERYTHING is a theory. The word "theory" has a specific definition that is different to what non-scientists expect.

Ideas start out as hypothesis and become theories when a way of falsifying them is found. You can never "prove" a theory because there are an infinite number of tests you could perform - to "prove" CCSVI causes MS would you have to test every living human (and perhaps every human who has ever lived). Clearly this is impossible, so in practice, you can only fail to disprove this theory.

The theory can be disproved by finding a single patient with CCSVI who doesn't have MS. The problem is that (a) CCSVI is a condition of cranial venous haemodynamics, a field which has been "poorly studied" (Dr Z's words) and therefore the testing procedures are new and require operator training; and (b) There does not appear to be a clear physiological definition of MS (correct me if I'm wrong). This means that it's going to be easy to falsify the theory simply through incompetence, or malice.

Unfortunately, for these reasons the CCSVI-causes-MS theory is likely to be contentious for years to come, even if it is correct - and I certainly hope it is, since I would like to be known as the guy who renamed MS to mean "Multiple Stenoses" :) (and got his wife back)


Good on with the MS = Multiple Stenosis! Cheer, you need to use that one!

I don't agree with the comment about if one person with CCSVI oesn't have MS the theory is blown, unless you wait 40-50 years. We don't know how long it could take for MS to develop, I myself didn't have any symptoms until I was 43, who know's when the stenosis developed?
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