CCSVI in Canada: Who/What/Where

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

Postby thornyrose76 » Tue Dec 08, 2009 7:59 pm

I live in Winnipeg, it's a given that nothings happening here...does anyone know when these procedures will be available in Canada? :cry:
User avatar
thornyrose76
Family Elder
 
Posts: 462
Joined: Mon Nov 23, 2009 4:00 pm

Advertisement

Postby happy_canuck » Tue Dec 08, 2009 8:44 pm

thornyrose76,

That's the million dollar question. I think we need to lobby gov't (national and provincial) to get them on board.

In the meantime, seek out vascular experts in your local area and see if you can find out anything from them. The neuros are going to wait, I think, for research to be completed, but this doesn't mean a vascular surgeon won't do the angioplasty, which seems to be the low-risk option for treatment.

~ Sandra
User avatar
happy_canuck
Family Elder
 
Posts: 267
Joined: Sat Nov 28, 2009 4:00 pm
Location: Victoria, BC Canada

Postby thornyrose76 » Wed Dec 09, 2009 7:23 pm

I actually yesterday received a letter from the MS clinic here in Winnipeg, there having a special meeting next week, the discussion about ccsvi...there basically saying what other clinics are saying, continue on with therapies that don't really work. A nurse at the clinic during my yearly visit which was last year stated bluntly that the injection drugs weren't as affective as they origionally first believed. I had been on BETASERON, but the doc said about three four years ago that there was no point in taking it bc it wasn't working and NOTHING has worked.
User avatar
thornyrose76
Family Elder
 
Posts: 462
Joined: Mon Nov 23, 2009 4:00 pm

Postby shortcake » Thu Dec 10, 2009 9:03 am

I've been reading on the forum for a while and I can't seem to find how to contact Dr. Haacke's clinic to see if I can get tested in Hamilton (I'm in Ottawa) Canada?

Does anyone know how to contact them? I did searches on Google, but didn't find it...
User avatar
shortcake
Getting to Know You...
 
Posts: 17
Joined: Thu Oct 09, 2008 3:00 pm
Location: Gatineau, QC, Canada

Postby dlb » Thu Dec 10, 2009 9:47 am

I dunno..... just a personal opinion but I think we won't see much action until after the Christmas season. Everyone is on a plateau.... clearing desks, arranging holidays, attending staff & family go to's, etc... I hope we see something right after the new year. I hate feeling like I have to "ride out" the season because the questions are on my mind morning to night, but that's what I feel I must do?!?
User avatar
dlb
Family Elder
 
Posts: 201
Joined: Sun Nov 22, 2009 4:00 pm
Location: Didsbury, Alberta Canada

Not waiting...

Postby fiddler » Thu Dec 10, 2009 3:36 pm

I don't expect the health system in Canada to react to this in time for me... I know and understand the need for "being cautious" in terms of public policy, but when it comes to an imminent threat to the quality of the rest of my life, that changes the perspective. I've researched this enough to try it as a solution even if I have to go across the Atlantic for it. As it is, now that Dake has shut down and Zamboni only does Italians (for now), that only leaves the Polish team.
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
User avatar
fiddler
Family Elder
 
Posts: 398
Joined: Wed Dec 02, 2009 4:00 pm
Location: Fredericton, Canada

Postby Johnson » Thu Dec 10, 2009 8:32 pm

I found this to be admirable of the doctor at False Creek Surgical.
CCSVI at UBC MS Clinic - Information and Support False Creek update, Part 2: Their doctor agrees the research is promising and said there's a long way to go before any of this will be confirmed. As importantly, he also doesn't want to take people's money on false or unproven claims of hope ~ he underscored Zamboni's own belief that nothing about the treatment has demonstrated a permanent reversal or reduction in disability in MS.

http://www.facebook.com/pages/Victoria-Vancouver/CCSVI-at-UBC-MS-Clinic-Information-and-Support/182832983940


But I would pay a few thousand every year, or two, to get tuned up and be relieved anew until the research is done.
My name is not really Johnson. MSed up since 1993
User avatar
Johnson
Family Elder
 
Posts: 979
Joined: Tue Dec 01, 2009 4:00 pm
Location: Ucluluet, BC

ccsvi meeting in Winnipeg

Postby dunkempt » Thu Dec 10, 2009 10:47 pm

thornyrose76 wrote:I actually yesterday received a letter from the MS clinic here in Winnipeg, there having a special meeting next week, the discussion about ccsvi...there basically saying what other clinics are saying, continue on with therapies that don't really work.


Yes, the MS Clinic voice mail spends about two minutes saying "Please leave a message about anything that DOES NOT involve ccsvi"

But a pharmacist told me there was going to be some Big Name guy (name not provided) and wouldn't it be exciting to hear what he will say? I suppose it would be too much to hope that will be our friend Dr. Omar Khan from Wayne State speaking on "Emerging Therapies" as Shannon, reported he did in Detroit?

That would almost make it worth going to just to see if his schtick had changed.

But the letter itself seemed to promise it was just one of those public meetings designed to control the message. Early days, small sample, can't extrapolate, go back about your business. No we won't run tests on just 5 volunteers as a pilot project, that couldn't be done for (mumbledy-mumbledy) reasons.

And to be honest, it IS early days. And the MS Clinic has only helpful, caring, and as far as I can tell upfront with me about, for example, the only limited help the various injections might provide. But they're operating out of a bureaucracy, and I would rather medicos generally be more cautious than not, so I’m not without sympathy for their position what with all the hundreds of patients in Manitoba calling and asking to be put on non-existent trials...

But for pete's sake, for the cost of putting on this meeting they could run MRVs on a few volunteers, and see if that warranted testing a few dozen more ... and so begin adding to the sum of knowledge rather than working to slow the process down...

-d
dunkempt
Family Elder
 
Posts: 142
Joined: Sun Nov 29, 2009 4:00 pm
Location: Heart of the Continent

Postby 81Charger » Fri Dec 11, 2009 1:46 pm

I'm in N.B nothing down here going on. We can go to Poland for $6000.00 Canadian money or wait 5 years for these money suckers to study ccsvi.

Glenn
81Charger
Family Member
 
Posts: 47
Joined: Tue Nov 24, 2009 4:00 pm
Location: New Brunswick, Canada

Postby ozarkcanoer » Fri Dec 11, 2009 1:52 pm

IMHO... The MS societies, MS clinics, MS neurologists etc etc were just blindsided when the tsunami of CCSVI hit them and they don't know how to respond. They want to go about business as usual. You know.... slow and steady moving in a straight line. We patients are reeling about CCSVI !! Can you imagine how the neurological community is also reeling ??
User avatar
ozarkcanoer
Family Elder
 
Posts: 1273
Joined: Thu Oct 15, 2009 3:00 pm
Location: St. Louis, Missouri

Postby nicko » Sat Dec 12, 2009 3:34 am

I'm in Nova Scotia, have an appointment with the MS clinic on monday. I'll bring up the CCSVI subject. I'm sure they'll shoot it down. But the nurse practitioner I have there is usually pretty on top of things.

The odd thing is I always knew I had circulation problems. My arms often go blue from lack of blood flow. I'm not sure if thats also related to CCSVI. But it only started after my first large MS attack.I have alot of neck pain and i'm pretty sure the neck pain I have is related... especially when I rub the painful area and get very dizzy.

Anyways I've been lucky to keep myself busy with being self employed as a computer programmer. So even if I had to fly somewhere and pay lots of money to get this procedure done I would. But it would be nice to just know for sure that my veins were in bad shape.

There no other places in canada that are doing testing currently?? Would be nice to be able to get people together from the maritimes to put up a big fuss to get things moving faster.
User avatar
nicko
Family Member
 
Posts: 99
Joined: Fri Jul 08, 2005 3:00 pm

Postby Belle » Sat Dec 12, 2009 9:52 am

Hi,, New member of 5 minutes ago. I live in NB and am getting nowhere. My docs keep saying, Not done in Canada! I've told them aboout Vancouver and Kinsgton, but they don't even sound interested. I've called a Vascular Surgeon but have not heard back. Dr Jock Murray, big MS guy from Halifax, has even said. " oh we've known about this for about a year and a half. " What the heck. I don't understand why there has not been more movement. Dr. Haake from Detroit messaged me yesterday, that they could send the MRI protocol to my MRI tech. That's great, now I need the MRI tech. ha ha
Are any of you members of Patients Like Me? It has been helpful.
Cold here today!!!!!!!
User avatar
Belle
Newbie
 
Posts: 1
Joined: Fri Dec 11, 2009 4:00 pm

Postby C3Glo » Sat Dec 12, 2009 11:20 am

Has anyone gone to False Creek Surgical Ceter in Vancouver to have the MRV & Ultrasound done??? What were your results? Did you feel like they knew what they were doing? I am thinking of going there to get it done & want to make sure they know what they are doing. From my understanding there needs to be specialized training to do the scans properly. If anyone can give me some info I'd appreciate it! Thanks!!!!
C3Glo
Family Member
 
Posts: 37
Joined: Fri Dec 04, 2009 4:00 pm
Location: Vancouver, BC Canada

Postby 81Charger » Sat Dec 12, 2009 11:35 am

Hi Nicko & Belle

Nice to see you on here, atleast there are 3 of us Maritimers on here.

Glenn
81Charger
Family Member
 
Posts: 47
Joined: Tue Nov 24, 2009 4:00 pm
Location: New Brunswick, Canada

new member

Postby steve185 » Sun Dec 13, 2009 7:02 pm

I have been reading this thread and decided to jump in. My wife has MS, we live in New Brunswick. Like everyone else we are anxious to get access to the new testing and treatment.
I am sure it all can be done in Canada, the problem is to get the ball rolling. This week my wife and I have a meeting with our Member of Parliament. We plan to discuss the high rate of MS in Canada, the new treatment, the importance of getting it to MS patients as soon as possible and what the Governement of Canada intends to do about it. I would encourage all Canadians who have an interest in this to do the same. I will post back and let you know how we faired.
Steve
User avatar
steve185
Newbie
 
Posts: 2
Joined: Sat Dec 12, 2009 4:00 pm

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service