This Is MS Multiple Sclerosis Community: Knowledge & Support

Can anyone report what is happening with CCSVI treatment in Canada or have I missed a thread?

As far as I know, you may be tested at a few places in Canada (Montreal, BC) but have yet to hear of anyone being treated here. So far, I have doppler images on a CD as well as a report but no vascular surgeon or interventional radiologist willing to help.

It makes me both mad and sad!

Argh.....I know...why arn't we catching on?

I have finally got a hold of False Creek Surgical Centre in Vancouver (about 4.5 hrs car ride away for me) so I am awaiting a booking procedure.

But then what?.....try and go to Poland?.....I'll keep you posted on my progress (or lack thereof)....lol....

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35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos

We aren't doing anything because as I've understood it . . . they need proof that this is effective and safe. Please don't shoot the messenger.

I saw my GP today as I am going to Poland and I was wondering, should I get some sort of treatment there, can I get referred to a VS or IR here so I don't have to go back to Poland for a follow up. He said probably not as they don't usually touch someone else's work and the fact that they probably won't know what to look for. My GP is very supportive, he was just relaying what he knows. He's willing to refer me but doesn't think I'll be seen.

best wishes to all!

Hi,

I would question this advice .. the venous procedures are already understood.. just not recognised for MS.. based on your GP's ( I'm sure he's a good guy don't get me wrong) comments..this would mean if you broke a bone off shore..got it fixed and came home that you'd have to go back to have the cast removed. Sounds juvenile but seriously.. what I do believe is that our healthcare system has been warned 'do not touch'.. !! It is an all or nothing system and there are 100,000 or so of us lined up at the door.. 'knock knock'..

I have confirmed stenosis from False Creek. I have confidence our system will start treating soon -- maybe even this year. Maybe put your name on a waiting list abroad, but keep watching what is going on in Canada for signs of movement. It will happen province by province, but it will happen!

Sandra

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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 />

good advice.. and i believe this too!

I am of the same belief as Sandra........we will be catching on as there is too much money to lose

I am going to get tested at False Creek - then if they start treating hopefully I'll be one of the first few to get a call back saying they are offering it.

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35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos

We should ask our National MS Society to help us here a bit. We MSers, caregivers, family members, friends are giving it quite a bit of money each year. We all agree that more research needs to be done. The people "running" the National Society have the money and the power to do it. They have a network of clinics from one ocean to the other. What are they waiting for ? After all, Dr Zivadinov is doing it right now! As we speak, he probably has imaged 1600 people in 4 months! He will be "liberating" MSers soon. I don't think that he has as much money as the National Society has received from us. Maybe he has more will to do this research ?

Pr Zamboni's discovery needs to be tested and investigated further; we all agree. Let's do it people of the Canadian MS National Society! As Canadians, one of the most hardly hit nation by MS, we could make a difference here. We did a great thing with the latest Olympic games. I'm convinced we can do the same with MS. Let's find out, shall we ?

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RRMS diagnosed '92; both IJVs ballooned and stent in azygos March 31st in Katowice, Poland.

hi all
i am [b]not getting tested first, i am going directly to poland. i'm also 4 1/2 hrs from false creek, but i am not willing to pay there and again in poland.t. i don't see the logic...but, maybe i'm missing something. yes, it will all come here, but how long ?

they know now, but still want more tests, more studies. good grief, all they have to do is study the people who have been liberated, but do they?

i have heard all the pros and cons and still think i'm doing the right thing, and would advise anyone the same.

esta wrote:
they know now, but still want more tests, more studies. good grief, all they have to do is study the people who have been liberated, but do they?


Yes, of course, that makes too much sense!
They do not consider testimonials 'proof'.

Again, just what I've been told.

I got my MRV done at Access MRI Surrey, BC, in January. I do have stenosis and saw a vascular surgeon in March. Nothing he can do right now. I registered with Poland. I can't wait for treatment here, I am getting worse by the month. Even if they start, who is first in line for the treatment etc. The MS society is not in a rush, it is all window dressing what they do right now. Whoever can go for treatment should go, if it works we can show it, this way we can help to clear the road for those who can't.

Hey Farmer - welcome...I'm a newbie too!

Glad to hear that you got tested and are on a move-forward basis.

How much did it cost; if you don't mind me asking! False Creek Surgical Centre is quoting $2350 for Ultrasound and Doppler.

Thanks - and good luck on getting liberated!

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35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos

It was $ 1400.00 no ultra sound. You get a report and CD.

Wow.....the MRV alone is $2070 and the ultrasound alone is $499.

I will also get CD's and radiologist reports.

Wonder why the difference?

_________________
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos