This Is MS Multiple Sclerosis Knowledge & Support Community

(CCSVI Locator) Message from Dr. Kristy Duncan, “It was a good day.”
http://ccsvi-ms.ning.com/profiles/blogs ... -duncan-it

Q-9512 — February 7, 2011 — Ms. Duncan (Etobicoke North) — With respect to chronic cerebrospinal venous insufficiency (CCSVI), the liberation treatment, and multiple sclerosis (MS):

(b) why were Canadian members of the International uni0n of Phlebology (IUP), who were part of the Consensus process regarding the diagnosis and treatment of CCSVI, not consulted during the August 26 meeting of the Canadian Institutes of Health Research (CIHR);
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(d) what percentage of surgical procedures in Canada have been double-blind tested over the last 40 years…
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(g) why did no member of the August 26 group declare any conflicts of interest, either real or perceived;
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(j) why did the August 26 meeting not include Canadian experts in the imaging or treatment of CCSVI and for what reasons was Dr. Sandy McDonald not included as a participant;
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(k) why did the August 26 meeting not include international experts in diagnosis and treatment of CCSVI, data presented at international scientific conferences or site visits to labs and operating theatres, which were or had been undertaking diagnosis or treatment;
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(n) who were all the members of the August 26 group and, for each member, what were his or her stated or declared conflicts of interest or perceived conflicts of interest;

http://www.canada.com/health/specialist ... z1DQoZHRRM

"If you talk to the interventional radiologists — the people who actually do the liberation procedure — about one-third of MS patients seem to respond very well," she said.


"This is significantly better than the outcomes for the drugs that exist today."

Another facebook post:


"I just got a phone call from MP Gord Brown. He was at the CCSVI Breakfast meeting with Dr. Hubbard, Dr. McDonald, and Dr. Haacke. He was very impressed with the presentations and the number of MPs and Senators who participated. There were many politicians from all parties present. Aglulkkaq was represented by a high level staff member. I wish I could remember everything he told me, but he felt it was a very productive meeting! It was very informative for MPs who have been struggling to understand the science behind CCSVI. He felt the meeting is going to help things move forward. Thanks a million for attending and for the update Gord!!!!"

Here is a link to an article about Dr. Hubbard's comments that American IRs are competing for Canadian patients with MS. What a travesty in a country which prides itself on our usually excellent universal health care.

http://www.canada.com/health/specialist ... z1DQoZHRRM

Let's get going Canada!

good job canada

start listening to the docs who know something not giving power to those who refuse to learn

AAAAaaarrrggghhh! I was in a van with two other people hurtling down the highway to get my follow-up in of all places, Barrie. There were significant amounts of snow on the way back, but on the way, we heard news reports.

I was denied my democratic right to free assembly, by no local follow-up care being available. I should sue the doctors! OK, maybe not this time... You have to choose your battles.

All I can say is: vote Liberal. I saw the questions here, but I didn't see the answers. To be honest some of those questions have no good answers. Vote Liberal and lets see what the next Opposition has to say... I bet it won't be about CCSVI.

Hi all

Searching for something else I came across this presentation by Dr. Haacke--apparently in Ottawa in February.

CCSVI by E. Mark Haacke, PhD of McMaster University and Wayne State University.

Enjoy

Sharon

Conclusions
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Canada can be a leader in this direction but must have:
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1) proper follow up for patients who have had treatment
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2) a national registry to monitor patient outcomes
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Minimal to no funding
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3) a national trial of on the order of 1000 normals and 1000 patients marrying ultrasound, MRI and venous angiography
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This requires dedicated funding just for this CCSVI study.
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One avenue to fund this might be via a centers-of-excellence programme.
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If Canada takes action now, it can have answers in two years.

What is a centers of excellence programme? And when he suggests a study on ultrasound, MRI and venous angiography, that sounds like another imaging study, not a treatment study.

On page 22, he lists 60 measures of possible characterization of venous abnormalities in CCSVI, he has been doing a lot of thinking about this....

When I see the images of stenoses, I am struck at how really bad my own were. There's one of a woman with severe MS, it's close to how my jugular presented (bilateral near complete occlusion at the level of the valves). But the difference between her and me is that she had azygous stenosis too presumably? I feel fortunate to have not had worse disability, I feel fortunate to have had this treated.

Ludyga T et al. Endovascular treatment for chronic cerebrospinal venous insufficiency: is the procedure safe? Phlebology. 2010; 25: 286-95.
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Access site complications
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Thrombosis
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Vessel rupture
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Distal embolization
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Flow-limiting dissection

Isn't a dissection like an aneurysm, when the vessel wall splits? But how is that "flow-limiting" or different than vessel rupture. It must mean something else. I don't see intimal hyperplasia among the possible complications, does that mean it wasn't seen?

What about the 1000s of Canadians who have been treated and need follow up? All MS patients get an MR anyway!

Is this a way of justifying the high price of MR imaging, if we are getting it done anyway to monitor brain lesion activity? I know when my neurologist next wants me to get an MRI, I will ask to get it done at Dr. Cumming's facility and to have the full Haacke protocol MRV when I'm in there. I'm not due for another MRI for another two years probably, so there's time for my neurologist to come onboard with this idea....

Sharon, this was a great presentation, thanks for linking it.