This Is MS Multiple Sclerosis Community: Knowledge & Support

If you test positive for CCSVI and are not able to get further screening or consultation with a specialist for further testing and advice about possible treatments you should be getting from our Canadian health care system, you should let Health Canada know and ask them for help.

This is the agency that is supposed to help Canadians who are unable to access the health care they need in Canada. Once someone has an actual diagnosis and cannot access specialist consultation, or treatment they should contact Health Canada and ask for help.

They deal with concerns from people not getting the care they need. You could contact.

I met Ms. Desforges at the First Canadian Patient Summit, and she has been made aware of the issue of CCSVI. She was interested and respectful.

Ms. Lucie Desforges,
Director,
Office of Consumer and Public Involvement,
Health Products and Food Branch, Health Canada.

address is
11 Holland Avenue, Holland Cross
Tower A, Suite 513 A.L 3005A
Ottawa, Ontario
K1A 0K9

or email lucie_desforges@hc_sc.gc.ca

phone number is 613 948 8431
fax 613 954 8637

Brightspot, you are indeed a bright spot, a gem.

Capegirl - I would not spend my Canadian $ in the US (sorry, American cousins), but if you cannot get what you want/need from Westmount, I would not hesitate to recommend False Creek Surgical. I have had a very good experience with them, although I was originally reticent. Their ultra-sound guy is skeptical of CCSVI, but has been trained by Dr. Simka, and told me that according to Simka's protocol, I am a candidate for intervention (he also told me that if he heard from 30 people that the intervention helped, he would believe it, and asked me to let him know how Poland goes for me.) I did an MRV with them too, and the narrowings are plain to see, even to my layman's eye. The cost for both was $2350. Add in your airfare to Vancouver, and you are looking at $3000? You get to spend your money at "home", you will not have to have a Peeping Tom body scan to fly to Buffalo, and the next day that you can get both scans done is some time in June, I believe (I was able to get Doppler on a Wednesday, MRV on Friday, but to do both on the same day would have been in May), and Vancouver is usually beautiful at that time of year.

If you have occlusions, False Creek can provide you with graphic evidence, that will arm you to move forward. See Brightspot's post above.

/babble

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My name is not really Johnson. MSed up since 1993

As you can see from Westmount square's website, they are no longer providing testing.
http://www.radiologymontreal.com/

So, can anyone tell me if the only canadian option for all the testing, using the correct protocols, remains False Creek? Last I heard, it is a 5-6 month waiting list (not too bad).

My neuro in Montreal is not supportive of CCSVI testing, and says why bother testing and wasting money whe there is no place to have the livberation therapy completed in Canada? True, but I still want to know.

Lastly, can anyone tell me if the testing can actually pick up anomalies in the veins of people with very mild RRMS? I do not have any MS symptoms at the moment, though MRIs have shown a few lesions (7) and my spinal tap confirmed MS (along with my optic neuritis 10 months ago). I am just wondering if you have to have PPMS or an aggressive form of MS before being able to detect problems. None of the research I have seen really indicates success for people with RRMS. I am seriously considering Poland, to see if we can stop this disease before it gets going too far, but I only hear of people with PPMS going for the liberation therapy. Any advice for a newbie?

Actually, I believe Dr. Zamboni says the earlier you treat it, the better your outcome. Then again, I'm reading results are all over the map. I don't believe having CCSVI is dependent on how worse off your disabillty is...if you have venous insufficiency, you have venous insuffiency.

Besides False Creek, I believe Barrie Vascular Imaging does testing. I'm not sure what the wait list is like, but you do need a doctor's referral.

Westmount Square is tempting because it's a reasonable price for just the neck ultrasound.

I went there and was reported back to my GP as 100% normal. But the guy had me doing Valsalva throughout. Another doctor (no, not a radiologist, not officially qualified but fairly smart) used a Doppler on me at 5MHz. I saw the stenoses with my own eyes. I am confident that what I saw will be visible on a venogram. I am not, and have never been, in fact I am insulted to be told that I am, normal. But especially in this case. I had heard good things about this clinic. But Zamboni, so I believe, has specified no Valsalva, and I think that made the difference. I don't know how Valsalva works but it is very temporary: not a bit like ballooning.

But if you're like me (disabled) you will want the azygous checked. That they have done Liberations before, is, I think, very important. I think there is a lot that cannot be seen without a venogram. It is often called the Gold Standard, for some reason. Dr. Sclafani says webs and such that can obstruct flow but do not appear on venogram are detectable with IVUS. I think experience, and not skepticism, are what is needed.

The Square One guy also said my venous blood had the consistency of porridge, but somehow that did not make it into his report. He expressed skepticism, saying that he had only found any of the signs in about 30% of MS people. Too many reasons not to accept the results, and if you add to that the biases of certain well-known Montreal neurologists, and the local effect of word of mouth, and, well I think I'd rather have an IR who had done Liberations, than a guy with a Doppler wand.

Of course Colin Rose would say I won't be happy until I'm told I have CCSVI, but I would rather be in the care of someone who can do something about it if I do, and I have seen my jugulars in their narrowed state. There was something in an exam mentioned here about collapsed jugulars. I think the important thing is that they are uncollapsed when you are upright, more than they would 'normally' be. So your cross-sectional area measurement comes out negative. This could happen either if the lying-down jugulars were not large enough, OR if the standing-up jugulars were not collapsed enough.

I was their last appointment for CCSVI anyway.

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience