CCSVI in Canada: Who/What/Where

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

Postby dlb » Wed Nov 25, 2009 3:17 pm

I just got an email today from the project coordinator at BNAC inviting me to fill out their questionnaire for the CTEVD study. I know I'm only 1 of the hundreds of thousands but I really hope I am accepted! I told my son & hubby that I should have filled out the form for 1 of them as a "normal control" - probably have a better chance of being involved, but it wouldn't give me any answers then! Anyway... that would mean they would have to be "normal"???!!

Fingers crossed!

Deb
User avatar
dlb
Family Elder
 
Posts: 201
Joined: Sun Nov 22, 2009 3:00 pm
Location: Didsbury, Alberta Canada

Advertisement

Canadian & Newbie too. Testing for CCSVI

Postby Tooney » Wed Nov 25, 2009 5:40 pm

Hello,

Am new to this site but not a new MS'er. Am more than anxious to get the testing done for CCSVI. I live in Saskatchewan but certainly willing to travel if that moves things along. We don't have private clinics here as you do in B.C. or Alberta. If anyone has any ideas as to where to go without compromising the accuracy of testing, I would much appreciate any information. Thank you
User avatar
Tooney
Newbie
 
Posts: 4
Joined: Mon Nov 23, 2009 3:00 pm

Postby dlb » Sun Nov 29, 2009 11:11 am

To "allnewtome",

I rec'd your pm & have replied. Ck your junk/spam folder for communication from the forum. That is where I find notifications of posts/ pm's, etc. I'm so new to this or any forum, but I don't want you to think I didn't want to reply to you. Let me know if you see this post.

dlb
User avatar
dlb
Family Elder
 
Posts: 201
Joined: Sun Nov 22, 2009 3:00 pm
Location: Didsbury, Alberta Canada

Postby Billmeik » Sun Nov 29, 2009 11:26 am

so Im in bc too and looking at this. I contacted Rauscher at ubc and got a form letter back talking about the study that may start in 4 to 6 months


but no, I think that' s too slow. I am a BC sailor too and I need to keep all the balance I can.


So now I'm looking at paying false creek to do it? I need the protocol info for my g.p.
User avatar
Billmeik
Family Elder
 
Posts: 694
Joined: Fri Nov 27, 2009 3:00 pm

What are your plans after False Creek?

Postby Tooney » Sun Nov 29, 2009 11:51 am

Hello all,

I am pretty much new to this site and am overwhelmed with the abundance of information - this is a good thing. I appreciate it very much. Am still fairly confused about where and how to about CCSVI testing and getting more anxious by the minute. As far as False Creek in Vancouver, that is encouraging to hear. I live in Saskatoon, Saskatchewan so that's an easy trip. Just wondering, at this stage with what we know....who will you contact re. the potential for surgery following the MR? Do we know exactly who is prepared to do the procedures at this point and are available are these individuals. Thank you for any insight you can share. Since this research hit the media I have been on an emotional rollercoaster and seem to be shorter on patience than I was prior - although much more hopeful at the same time. Any one else experiencing this?
User avatar
Tooney
Newbie
 
Posts: 4
Joined: Mon Nov 23, 2009 3:00 pm

Postby happy_canuck » Sun Nov 29, 2009 12:29 pm

I contacted False Creek Surgical and their ultrasound doctor will review the Doppler protocols I sent them when he returns in a week (sometime after December 4th). I am hoping they will have the equipment, skill, and willingness to do the scans, but no word yet on if this will happen!

My fingers are crossed for a "yes" from them -- I will post their response here and on the Facebook pages for CCSVI and the CCSVI at UBC MS clinic page.

Cheers,

~ Sandra
User avatar
happy_canuck
Family Elder
 
Posts: 267
Joined: Sat Nov 28, 2009 3:00 pm
Location: Victoria, BC Canada

Postby dlb » Sun Nov 29, 2009 12:37 pm

Tooney,

I signed up a few years ago to yahoo news which is generated by inserting "keywords". I got a news alert this AM about McMaster & Dr Haacke. This report stated that so far Alberta & Saskatchewan & Hamilton have signed up - not exactly sure if it is for his software/testing procedure or the study he's conducting?? I sent you a pm a few days ago but it is still in my outbox. Ck your spam/junk folder - that is where I find notification from the forum....
I guessed by your name you were from S'toon & I saw in the original info on W5 website that there is a collaborator in your city. That website no longer has the info because of the overwhelming response to the individuals listed, but somewhere in Saskatoon, someone exists that will someday be of help to you. Keep digging Take care...
User avatar
dlb
Family Elder
 
Posts: 201
Joined: Sun Nov 22, 2009 3:00 pm
Location: Didsbury, Alberta Canada

Postby dlb » Sun Nov 29, 2009 12:55 pm

This from the Hamilton Spectator (as per the news alert I last posted about):

Haacke, an adjunct professor at McMaster and expert in imaging who was also working on the role iron plays in MS, met Zamboni five weeks ago and offered to test his theory using the software he created that improves the resolution of MRI images and quantifies iron.

He’s turned his main lab in Detroit mostly over to this work despite having no funding for it.

He’s currently recruiting sites around the world to take part in the research, hoping to have initial results by spring.

“My role is really the torch bearer,” said Haacke. “I’m trying to co-ordinate this international study so we can get as many sites as possible on board to be testing this together.”

He says Edmonton, Saskatoon and Hamilton have signed on so far in Canada.

“We’re convinced here that we should be at least testing the theory because obviously it’s very important,” said John Bienenstock, director of the Brain-Body Institute.

“It would change the lives of these people and would produce a radically different view of the disease. However, it’s not been reproduced elsewhere yet.”

It’s essential other researchers try to reproduce Zamboni’s results with larger numbers of patients to see if his theory holds.

The MS Society of Canada has just put out a request for research grant proposals to study CCSVI.

Hamilton plans to apply so it can expand its study beyond 20 to 30 patients.

Haacke has also offered to examine the scans of any MS patient who can get an MRI following the protocols he’s set up.[/i]
User avatar
dlb
Family Elder
 
Posts: 201
Joined: Sun Nov 22, 2009 3:00 pm
Location: Didsbury, Alberta Canada

looking for people in ontario

Postby angie » Mon Nov 30, 2009 11:27 am

hi there
i am interested in people doing it in canada as well as i am in toronto, ontario.
i went to the link that dlb posted (ctv) and looked for the 'map' that was to indentify radiologists in canda, however I can't find the map?
can anyone help me with possible people/radiologists etc. in ontario?
thx
User avatar
angie
Newbie
 
Posts: 3
Joined: Sun Nov 29, 2009 3:00 pm

Postby dlb » Mon Nov 30, 2009 12:02 pm

Angie,

I guess due to the overwhelming amount of calls & emails they have gotten, the website has an update in place of the area that used to be on that site. I had copied & pasted the original Q&A page & that map link is still on the page that I copied onto my computer but I can no longer access it that way either. Did you read in one of my last posts the portion I copied from an article in the Hamilton Spectator. Dr Haacke says that Saskatoon, Edmonton & Hamilton have "signed on" to something regarding this testing, Interpretation of results _ I'm not exactly sure yet. I am still going to count on my neuro to update me because I know she has made contact with the collaborator that Haacke has in Edmonton. Haacke also expects to have his website updated shortly - there will be something in Hamilton. Hope you find something too.

dlb
User avatar
dlb
Family Elder
 
Posts: 201
Joined: Sun Nov 22, 2009 3:00 pm
Location: Didsbury, Alberta Canada

Postby Billmeik » Tue Dec 01, 2009 8:54 am

you know the flalse creek technician is going to take a long time to train. I'm flying down to stanford to get the pics.
User avatar
Billmeik
Family Elder
 
Posts: 694
Joined: Fri Nov 27, 2009 3:00 pm

ccsvi in canada

Postby katie45 » Mon Dec 07, 2009 9:10 pm

I live in bc,,,This is reportedly a vascular problem. Why, then do we need neuros to approve angioplasty which has been tested and approved for years?As I see it, blocked veins can cause stroke...we need vascular surgeons NOT neuros and we need this fixed promptly not after years of testing and trials!!
User avatar
katie45
Family Elder
 
Posts: 239
Joined: Mon Oct 18, 2004 2:00 pm
Location: Canada

Postby happy_canuck » Mon Dec 07, 2009 10:29 pm

False Creek Surgical in Vancouver is doing the MRVs and Doppler scans. A few of us are asking them to provide stats on % positive/negative for CCSVI and other test details so we can confirm they have the skill. They assured us they had reviewed everything before offering the service. There's no sense putting out the $ for a false negative / false positive.

It's a private clinic, so they charge. The MRV is $2070 and the Doppler is $499. One friend of mine had her MRV done today and said she was only their second one to get CCSVI testing in the MRI.

You can follow the experiences of those trying this and other BC options on our Facebook page:
<shortened url>

It is still an option to get tested, I think, even if treatment in Canada is a while into the future yet. They will probably have to repeat all the testing when treatment is available, so I think only those who really want to know now and can afford it should get the scans done. Once it's mainstream, it should all be free :-)
User avatar
happy_canuck
Family Elder
 
Posts: 267
Joined: Sat Nov 28, 2009 3:00 pm
Location: Victoria, BC Canada

Postby Billmeik » Tue Dec 08, 2009 8:35 am

Im calling false creek now
User avatar
Billmeik
Family Elder
 
Posts: 694
Joined: Fri Nov 27, 2009 3:00 pm

Postby Billmeik » Tue Dec 08, 2009 8:49 am

ok they are doing it and they have found the ccsvie in one? patient so far... they are taking names right now and have room dec 15
User avatar
Billmeik
Family Elder
 
Posts: 694
Joined: Fri Nov 27, 2009 3:00 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