CCSVI in Canada: Who/What/Where

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

Postby jimmylegs » Thu Jan 21, 2010 4:23 pm

heard a rumour there's something stirring in toronto.. can't confirm just yet.
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Postby newfie-girl » Thu Jan 21, 2010 4:53 pm

nicko wrote:I know how everyone feels, I'm classified as RRMS, but I'm starting to have some slow progression between attacks. Which scares the living daylights out of me. Not to mention my balance and feeling in my legs. It feels like i'm walking on squishly ground even if its cement. If i try to stand still I sway like being on a boat in the ocean. I'm pretty sure another couple years and I won't be walking.

MS or not, if we have these vascular problems, they should be fixed should they not? Why do they need to run trials on this... If someone doesn't have ms and they found the same thing in legs or arms etc. They would fix them without issue. Just because we have MS they want to run trials to see how effective the procedure is. Even if they had no effect on MS they should still be fixed.... Them running long trials is just plain wrong in my opinion. Basically they are playing with our lives. The increased risk of stroke alone. I'm sure MSers have a much higher risk of stroke. But because of a pre-existing condition they consider us sickly and don't pay much attention to the numbers.

If MS clinics and dr's really cared. They would be testing us all right now to see if we all really have these defects in our necks and spine. IF most of us do have it, we should be in line to get fixed up.

Like others have said we need to push this issue now. We need to make it heard. We need to make such a fuss that they just fix us so we will shut the h*** up. We can't let this get dragged on and give the drug companies time to shut this up. So they won't lose the billions they suck off of us every year with very in-effective drugs.

Getting politicians involved might help though. As the government here in Canada pays for all our MS drugs, besides Tysabri. One procedure to help us out and the probability of getting off these expensive drugs. Should be a big opportunity to save alot of $$.

I know I know, I rant.... But it feels good ;)
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Postby newfie-girl » Thu Jan 21, 2010 5:05 pm

I agree totally Nicko, I am becoming so frustrated with all of this, i go to bed at night thinking about it and wake up thinking about it. I know this will drag on and on. If we have the narrowings or blockages than we should have the option of getting this fixed, its only humane, after all If I had a blockage of my artery to my heart than I would be treated with the proper procedure, we as MSers don't even have the opportunity to see if we have CCSVI in our own country, which for me is Canada.Oh and by the way where are all the celebs who have MS ie. Montel, Terry Garr?, and oh so many more that I can't remember. We can't let this go without a fight, we need to lobby our governments to provide he health care professions with the adequate equipment to perform these tests and fix the problems, THATS OUR RIGHT!!!!!!!!!!!!!!!! I am sick and tired of research, trials, plecebo, bla bla bla, We want action and we have to make ourselves heard.
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Postby youbetcha » Thu Jan 21, 2010 5:38 pm

Jimmylegs,

Toronto eh?

Keep us posted! :D
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Postby jimmylegs » Thu Jan 21, 2010 6:19 pm

yep, toronto :) might not be able to clarify til sunday.
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Postby youbetcha » Thu Jan 21, 2010 6:34 pm

No problem...will wait till Sunday!
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Postby TFau » Thu Jan 21, 2010 6:56 pm

We also can't wait to hear! We're in Oakville (30 minute drive to TO on a good day)!

Theresa (and Rob)
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Postby thornyrose76 » Thu Jan 21, 2010 7:27 pm

jimmylegs wrote:heard a rumour there's something stirring in toronto.. can't confirm just yet.


A nurse at my clinic informed me that Toronto ms clinic ( I think) is about to undertake a study where they are examining pediatric MS patients and comparing them to other children, basically checking to see if there are blockages in their veins, something to that effect. If children MS patients are found to have these blockages then there is a pretty good chance that Zamboni's theory is correct . I, however believe there is pretty good evidence and more so to come with the Buffalo Study and UBC study. THOUGH time will tell unfortunately , as time isn't on my side... :cry:
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Postby Billmeik » Thu Jan 21, 2010 8:06 pm

Didnt you guys see this from montreal?

The Westmount Square Medical Imaging is acutally offering The doppler following the good protocol... for 450$

1 Westmount Square C210
Montreal Quebec
H3Z 2P9
Canada

Nous rejoindre:
Téléphone: 514-939-9764
Fax: 514-939-9363


Im thinking about flying out there. At least they seem to be getting the shots.
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Postby Billmeik » Thu Jan 21, 2010 8:06 pm

Didnt you guys see this from montreal?

The Westmount Square Medical Imaging is acutally offering The doppler following the good protocol... for 450$

1 Westmount Square C210
Montreal Quebec
H3Z 2P9
Canada

Nous rejoindre:
Téléphone: 514-939-9764
Fax: 514-939-9363


Im thinking about flying out there. At least they seem to be getting the shots.
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Westmount

Postby fiddler » Thu Jan 21, 2010 8:38 pm

Billmeik, I was thinking of going there to make sure that its not bone pinching my jugular (then normal liberation probably won't work), but was waiting for confirmation that they (Westmount) really know how to do it. Is there confirmation of that from someone? As I understood it, False Creek followed the right protocol - and still didn't get it right (at least at first).
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby babiezuique » Fri Jan 22, 2010 12:33 am

I have been there tuesday. The man follow the zamboni protocol, he takes more than an hour to do the exam and.... he told me right the what was my problems...

Barbara
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Postby jimmylegs » Fri Jan 22, 2010 5:31 am

interesting, thorny, i did not get that detail about children being the focus when i heard that rumour. i hope they will also turn some attention to getting answers about the venous status of patients that are suffering now. keep an eye on clinicaltrials.gov folks :)
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Postby broomdancer » Fri Jan 22, 2010 10:28 am

Hi All:
Live in south eastern Ontario and decided to call several Imaging labs to see if they are aware of Dr Haack's protocol and found 3. Barrie Ont. reported to me that they have found 45 people with blockages. They are hoping in the near future to have 2 Drs in Barrie to peform procedures. Then I spoke to a technician at the Oshawa Glazier Medical Imaging Center he seemed confident also. Thirdly, I contacted a lab in Port Perry and they have found blockages in MS patients. What impressed me was how she implied that the techs were highly trained and fully aware that it
was a very new procedure. They have colour Dopplor and 3D.
My husband visted our GP who is on board with this and wants to follow my husband's journey and wrote up a requisition for the tests. Called the Lab and we are booked for Monday for both tests which will take l and half hrs. We are on the list for Poland in August but if things begin to happen sooner here? Our GP didnot think though, that much would happen for the next 2 years. Maybe we should contact Michael Moore?
Sorry about the long post but I am so excited and I will let you know the results. Keep fingers crossed.
Regards Diana
Have a friend with MS and she is booking at the center also.
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Postby TFau » Fri Jan 22, 2010 10:33 am

Thanks Broomdancer!

This week my husband went to a walk-in clinic to ask for a referral for an ultrasound for MS patients in Barrie (I spoke to the people in Barrie and they said if you say it's in relation to MS, they'll know what to do - I'm following up today though).

That is so exciting that they may be offering a treatment in Barrie at some point!

Thanks,
Theresa
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