CCSVI meeting in Vancouver and ONLINE!

[cweigle]

Hi there. I work with CBC News (TV) and would like to get in touch with you as soon as possible. Can you give me a shout at 416-205-3735 or send me an e-mail to carlos.weigle@cbc.ca? Thank you!

[happy_canuck]

Hi there. I work with CBC News (TV) and would like to get in touch with you as soon as possible. Can you give me a shout at 416-205-3735 or send me an e-mail to carlos.weigle@cbc.ca? Thank you!

I spoke with Carlos, who was putting together some research on CBC's story to do with the role social media plays in bringing CCSVI into the forefront. Unfortunately, I live in Victoria and CBC could not make arrangements to interview me in time for their broadcast deadline.

For those from elsewhere, Victoria is a provincial capital (like a state capital). We are also on beautiful Vancouver Island, though, which means national media aren't usually hanging around. Carlos tried to get an affiliate station to do the interview hook-up, but couldn't.

[Niceflow]

Hi Sandra,

I called the False Creek clinic today, and told the lady who is in charge of this project, I am interested in the tests and eventually the procedure. She asked me for my email, and she said she will send me the information related to that.

Still this evening I haven't got anything yet in my inbox. So, I wonder if I should contact one of my friends in Vancouver and ask them to go personally there and follow up on this. I am thinking, maybe somebody going there personally will get more attention. How do you feel about that?

[happy_canuck]

Hi Sandra,

I called the False Creek clinic today, and told the lady who is in charge of this project, I am interested in the tests and eventually the procedure. She asked me for my email, and she said she will send me the information related to that.

Still this evening I haven't got anything yet in my inbox. So, I wonder if I should contact one of my friends in Vancouver and ask them to go personally there and follow up on this. I am thinking, maybe somebody going there personally will get more attention. How do you feel about that?

Niceflow,

I have always got an answer through telephone or email inquiries. You can get the form for the MRV on their website. I have the PDF for the form for the ultrasound -- if you PM me your email address I will send it to you. These are the forms you need to get your GP to sign to make the referral for both tests. He just puts "CCSVI testing" in the tests required box on each form -- FC knows what to do.

Cheers,

Sandra

[Niceflow]

Thanks Sandra.. I got their email today will all the information about the tests and costs. Also I got the form to fill out.

However they state that they do not perform the surgery !!

So, I will have to think about it.. I do have a date in Europe for September.. so I have to make a decision..

[Villagemaid]

yes...I am also getting tested at False Creek on May4th and 5th.......and am a little sceptical about paying twice as I am on a waitlist for both Poland and Bulgaria.

But, I do know that Dr. Godley is trying everything in his power to be able to preform the procedure at his clinic.

You do get a copy of all the scans and reports and I will present these if I go overseas.

[Niceflow]

Yes, Villagemaid, I understand the puzzle.. Does Dr. Godley work at the False Creek Clinic or does he have his own?

Sorry, I am not aware about what Dr Godley is trying to do.. I saw his name here but am not aware about him..

[Villagemaid]

He is the Clinic Director of the False Creek Surgical Centre

http://www.falsecreekhealthcare.com/abo ... s/mgodley/

[Niceflow]

Thanks Villagemaid for the information. Actually I got today an email from Europe and I am asked to confirm if I am willing to go there mid-July.

On the other hand I called False Creek on Friday to schedule an appointment for the tests but was not successful.

So, I have to make a decision very quickly now.. I guess I will have to confirm the Europe date, although I would have preferred to have the treatment here in Canada.

Sandra, what is your feeling?

[happy_canuck]

Hi Niceflow,

That is quite the dilemma. Which clinic in Europe would be a consideration -- check their track record for sure. If you have good doctor support here at home for the trip, i.e., they know you're going and are prepared to deal with followup care, that would be a benefit. I know they HAVE to care for you, but if they are supportive, it would help. Last, when you have to pay for Europe can be part of your decision. If they need a hefty non-refundable deposit or payment in full now, you may not have a choice but to pay if you want to keep the July date.

As for treatment in Canada, I am holding out great hopes we will get in on the West Coast soon. But, there's only one clinic and one IR (that we know of) -- he can't do 75,000 Canadians by himself. I guess I am saying you may not have as good as chance of getting treated in Canada by summer even if FC gets up and running very soon with treatments. If you can wait a bit b/c Europe doesn't need money up front, I suggest you hold off as long as you don't lose your July appointment. That way, we may know what FC has up its sleeve.

Cheers,

Sandra

[BELOU]

Hey Happy_Canuck,
you really think that it will be available this summer in BC? Honestly, I dont' think that's going to be available until one to two years in Canada. I just read the memo from the neurologist association of Quebec and they clearly state that this CCSVI theory is far to be proven and bla bla bla... Well maybe your neuros are more open minded than ours but if it's the case, I'll move my family to western Canada in a few months! do you need any mechanical engineer over there

[happy_canuck]

Hey Happy_Canuck,
you really think that it will be available this summer in BC? Honestly, I dont' think that's going to be available until one to two years in Canada. I just read the memo from the neurologist association of Quebec and they clearly state that this CCSVI theory is far to be proven and bla bla bla... Well maybe your neuros are more open minded than ours but if it's the case, I'll move my family to western Canada in a few months! do you need any mechanical engineer over there

Hi Belou,

I think we may know by summer WHEN it will be available, but it may be a while for people to get treated once line ups start to form. My advice for NF was to keep the Europe appointment open as long as possible -- if Canada opens up and treatment can be had here in, say, October, maybe Europe isn't as necessary. I realize some people cannot wait and for them, I would say get treated ASAP whenever you can get it at a reputable facility.

That's my strategy, anyway. I never got an appointment in Europe (many unanswered emails -- I gave up), so I have a lot of eggs in the Canadian basket.

Sandra

[BELOU]

Hold on! Dr. Mark Godley will be performing libeation procedures soon or what? (I just saw his webpage). I begin to be jealous. I knew I should have moved to BC few years ago and start my carreer over there.

Well, In Quebec we were the first province to accept the Tsyabry drug. Unfortunately that's not a good consolation prize.

Marc

[BELOU]

I think we may know by summer WHEN
Sandra

Ok, I see the WHEN... I just hope that people who have been liberated continue to feel good so neuros (not only in Canada) will see the impact on the quality of life of MSers. From what I read around the web that seems to really help. I talked to one french canadien that has been liberated (first one?) and for him it's a success so far. He went to Poland and came back with few stents.

God bless CCSVI

[Niceflow]

Thanks Sandra for your valuable input. I wish we had open minded and courageous IRs and vascular surgons here in Quebec