Findings at FCSC Vancouver/Canada

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

Postby mangio » Tue Feb 02, 2010 11:21 pm

Interventional Radiologist. They were the first to have Dr. Zamboni
speak at their annual Vascular symposium well before anyone else.
bye
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Postby Bentley » Wed Feb 03, 2010 1:04 am

mangio wrote:Heh Johnson, thanks for your post. I can't get the stents because
I have so many complications from other autoimmune problems.
But I have decided to try angioplasty and hope that will be okay.
An ex-beau that is a surgeon in Victoria has talked to me at length
about all this from his experience with stents and given me some
strong advice to ponder.

He also told me he heard of a surgeon doing the liberation procedure on a very young person in eastern canada this month mostly
on compassionate grounds because of the severe nature of the
ms and was found to have ccsvi. But nobody else can
get the surgery until the data is clear enough to support Dr. Zamboni's
theory. He felt if the results were okay at Hamilton many in the I.R.
field would jump on this. He got paid as little as 400.00 for some
surgeries he did (out patient ) and thought he would get about
1200 for ccsvi. I told him he needs to work in Poland!
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False Creek Findings

Postby MarkS » Sun Feb 07, 2010 12:07 am

I had an Ultrasound and MRV at False Ceek Clinic and they found nothing. Either they are not using the proper protocols and the testing is flawed or maybe they are correct and CCSVI is not the cause of my MS. Seems strange that Dr. Zamboni and others have found most patients had a stenosis but not so much in Candada
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Postby Billmeik » Sun Feb 07, 2010 8:30 am

really you should ask for your money back. Its a procedure that demands a transcranial dooppler and they don't have one. The whole doubt in ccsvi is caused by the fact that if you take scans like you always have, you don't see it. False creek is over the line, if they did 40 people then 20 times 2000, 40 grand has been taken from patients under false assumptions and should be returned. Profiting from incompetence is not on.
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out of line?

Postby goddles » Sun Feb 07, 2010 6:19 pm

Actual bilmiek you are the one out of line
I am returning from the Hamilton meeting were it was widely acknowledged that Ccsvi needs further studying. Transcranial dopler was hardly mentioned and is not a requirement . In fact. The most definitive test is venograghy.
MRV needs further fine tuning as pointed out by Dr Haacke
Anyway to suggest that False Creek is incompetent is bordering on defaming the good work we do.
Any unhappy patient that received care at our centre can call me or send me a personal PM and I will be happy to provide all the possible help at my disposal.
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Postby cah » Sun Feb 07, 2010 6:45 pm

Dr. Godley,

first of all, let me tell you how much I appreciate that you come over here and talk to us. So what would your explanation be for the big differences in the percentage of vein stenosis found in your and Dr. Zamboni's patients?
"There is only one good, knowledge, and one evil, ignorance." Socrates
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Postby mangio » Sun Feb 07, 2010 7:16 pm

It should also be noted that Stanford does not do transcranial.
I apologize sincerely for these on-going professional attacks by
certain members of ThisIsMs and am personally very embarrassed
by it all. I would hope that one of the elders or moderators
of this forum would be big enough to step-up and take some
responsibility for this ill advised dialogue. Shame on B.M.
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Postby Lyon » Sun Feb 07, 2010 7:22 pm

.
Last edited by Lyon on Mon Nov 21, 2011 8:32 pm, edited 1 time in total.
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Postby mshusband » Sun Feb 07, 2010 7:49 pm

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Postby Lyon » Sun Feb 07, 2010 7:53 pm

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Postby AlmostClever » Sun Feb 07, 2010 7:55 pm

It's easy to sit back and say something needs furthur studying.

I am certain that "furthur studying" is widely acknowledged at every other medical seminar as well - cancer, AIDS, toe fungus, whatever...

The fool who publicly says something does not warrant further study (or declares a cure for that matter) and is then proven wrong has in effect written his own professional credibility death sentence. CCSVI will certainly offer plenty of oppurtunities for each side...




Doc. G, Thanks for your message and I am sure we all look forward to furthur updates about the conference. Profit motive aside, I can really appreciate the fact that False Creek was willing to take the initiative to begin offering this testing. Confidence and perfection will follow with more experience and technology advancement. Sincerest Regards -
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby ozarkcanoer » Sun Feb 07, 2010 7:56 pm

On the Facebook page "Ed Weiss" says exactly the opposite from "godles" about Doppler ultrasound vs MRI/MRV. So who is telling the truth ? We will all be able to see when the video of the conference is online :

"Hi all. I attended the workshop today, and let me tell you, the cookies they served were really good. In all seriousness, it was quite an interesting day, and I learned a lot, including how many aspects of CCSVI are still waiting to be studied and explored. The audience was pretty receptive to the information presented; only one or two questioners posed any kind of challenge to the findings. I compiled some notes, but they're rather voluminous, and presumably once the video comes online you can watch it for yourself.

It seems like the work of Drs. Zamboni, Haacke, and Zivadinov are really starting to come together to form a coherent picture of things. One item of clinical interest for you was the emphatic point by Dr. Zivadinov that MRV (MRI venography) appears to be quite inferior to ultrasound when it comes to detecting CCSVI, at least when the ultrasound is done by people properly trained to look for it. He also mentioned an exciting press release coming out next week.

One of the other interesting general points made was that progress in moving CCSVI from bench to bedside, as it were, is happening remarkably fast for something of this nature and scale. It sounds like there's definitely reason to be optimistic."

ozarkcanoer
Last edited by ozarkcanoer on Sun Feb 07, 2010 7:57 pm, edited 1 time in total.
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Postby mshusband » Sun Feb 07, 2010 7:56 pm

Exactly ...
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why call names?

Postby prairie » Sun Feb 07, 2010 7:56 pm

Lyon,
there you go again calling people names. Why do that? If your arguments are persuasive you have no need to resort to name calling.
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Postby TFau » Sun Feb 07, 2010 7:57 pm

Um, that was a really inappropriate and shocking response, Lyon!
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