CCSVI meeting in Vancouver and ONLINE!

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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mangio
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Post by mangio » 8 years ago

h.c. I'll never sleep tonite. Bev thanks for letting us into your home
and Dr G, your an angel!

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ndwannabe
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Post by ndwannabe » 8 years ago

happy_canuck wrote:So apparently only 50 minutes of Dr. Godley's announcement and Q&A recorded, but for those of you who missed it:
Yay! Thank you for the recording! I was being so torn between the ongoing chat and the webcast that I missed about third of what was said

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mangio
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Post by mangio » 8 years ago

Sandra,
I honestly think you could run this country. Thankyou for everything, and
finally I BELIEVE.

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Villagemaid
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Post by Villagemaid » 8 years ago

I am giddy.............oh my gawd.....to be a part of a ground-breaking time in MS history.....thank you to ALL who made tonight happen......
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos

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Johnson
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Post by Johnson » 8 years ago

Well, wow.

Thanks so much Sandra, Dave, Bev, Mark...

Now, Shhh.

Somebody had Johnson staked out already too, and I had to appear as Johnsonreally, which was really, really weird - to be pseudonymous to a pseudonym. I bet it was Yves Savois. My name is still not Johnson.

Shhh.
My name is not really Johnson. MSed up since 1993

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happy_canuck
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Post by happy_canuck » 8 years ago

April 9, 2010 -- the day the Liberation procedure comes to BC!!

It was a heart-racing moment when we realized we may only be WEEKS away from False Creek opening their doors to treat CCSVI.

I may not sleep a wink tonight!

Dr. Godley -- we owe you our heartfelt thanks for not only championing this cause and bringing it to Canada, but doing it right. You have given up countless days with your family to do this for us.

Vancouver residents -- Dr. Godley is running to be elected by fellow doctors in District 3 to the local health Board. Talk to your GPs and tell them you want them to vote for Dr. Mark Godley. We need a physician like him to represent the interests of all patients.

Dr. Godley also may need us to do a show of support to the College of Physicians and Surgeons within the next week or so. I will post on TIMS and Facebook if he asks us to rally with him.

We decided we want to come together again as a group in a couple months. More of us will be tested by then and some may be treated; we made a commitment to each other to stick together to whatever outcome is available for each person. This is exceedingly good news today, but we know some of us may not have CCSVI or it may be inoperable. But we are now a local force in Vancouver and will not give up!

My thanks to Bev for lending her wonderful home, and to Bev's sisters Penny and Peggy for taking care of us and all the great refreshments.

~Sandra
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tiny ... 44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tiny ... 3wzmkmg</a> ~Facebook</strong><br />

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Billmeik
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Post by Billmeik » 8 years ago

wow the first person got liberated in BC! That's huge.

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esta
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Post by esta » 8 years ago

hi all
what an uplifting broadcast, and you guyr did it all!!!
thanks, well, many thanks to dr. godley for his tireless effort and support to see this through...gratitude is too small a word for this. i have forwarded this to ouer local MS Chapter coordinator for her to see the "other side" of the picture that the MS soiety is painting...i believe, as a strong front, we will get there, and it looks like it will be sooner than later!!!
esta :D

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mangio
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Post by mangio » 8 years ago

H.C. don't want this down on print but is it true? ms to?

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happy_canuck
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Post by happy_canuck » 8 years ago

mangio wrote:H.C. don't want this down on print but is it true? ms to?
mangio,

I'm afraid I don't understand your question. If you are asking if people are being treated in BC, the answer is most definitely yes! False Creek did one procedure Friday and several more are scheduled over the next tqwo weeks, but all details beyond that are hush hush.

~Sandra
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tiny ... 44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tiny ... 3wzmkmg</a> ~Facebook</strong><br />

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Niceflow
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Post by Niceflow » 8 years ago

Hi Sandra, Thank you for all your efforts and for the information. I live in Quebec and would like to know how to contact False Creek for more information. Do you know anything about costs for tests and treatment. And if I want to be scheduled for the procedure, what should I do?

Thanks again for your time.

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happy_canuck
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Post by happy_canuck » 8 years ago

Niceflow wrote:Hi Sandra, Thank you for all your efforts and for the information. I live in Quebec and would like to know how to contact False Creek for more information. Do you know anything about costs for tests and treatment. And if I want to be scheduled for the procedure, what should I do?

Thanks again for your time.
Hi Niceflow,

Here's their website: http://www.falsecreekhealthcare.com/

It is so exciting that we are close to getting treatment at another centre in the world. And even better that it is in Canada (go local!). False Creek has to proceed slowly with getting the go-ahead, but they are making good progress. They didn't release any costs for treatment yet because Dr. Godley said it will all depend on a number of factors that they haven't finalized.

You can always book yourself in for testing and watch future developments to see if treatment would be available by then too. The testing also depends on what you want, but the ultrasound is around $500, the MRV is about $1800 and the extra flow analysis from Dr. Haacke is $400. Dr. Haacke takes a while to get the results back to you, so it wouldn't be possible to do testing and treatment close together if you want him to do that specialized analysis.

FYI, my ultrasound, my MRV, and my flow analysis from Dr. Haacke all showed exactly the same stenosis. So, could I have had just one test done? Yes...but I didn't know that beforehand!

Good luck to us all,

Sandra
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tiny ... 44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tiny ... 3wzmkmg</a> ~Facebook</strong><br />

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Niceflow
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Post by Niceflow » 8 years ago

Thanks Sandra. So, what would you recommend? Doing the Ultrasound only, or the MRV only or both with the analysis ?

I started booking a date in one of centers in Europe, but if it becomes feasible in Vancouver, I'd rather stay here in Canada and spend my money in my own country :)

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happy_canuck
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Post by happy_canuck » 8 years ago

Niceflow wrote:Thanks Sandra. So, what would you recommend? Doing the Ultrasound only, or the MRV only or both with the analysis ?

I started booking a date in one of centers in Europe, but if it becomes feasible in Vancouver, I'd rather stay here in Canada and spend my money in my own country :)
Niceflow,

I'm sure the clinics don't want to hear this, but why not book both? That way, you can judge which one is best able to do what you want closer to the date (as long as that doesn't add to your travel or other expenses). I'm also not sure when you have to pay for Europe -- with False Creek everything was on completion.

Cheers,

Sandra
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tiny ... 44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tiny ... 3wzmkmg</a> ~Facebook</strong><br />

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Chrystal
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Post by Chrystal » 8 years ago

Thank you Sandra and the others for a great web-cast with such wonderful news from Dr. Godley!!!!!! Thank God for his support.

Thank you also for the additional information you have given us here about False Creek - website, testing costs, etc., Sandra.

Take care and God Bless,
Chrystal

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