Findings at FCSC Vancouver/Canada

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

Postby youbetcha » Fri Jan 29, 2010 2:39 pm

tzootsi - I think you're absolutely correct.

My GP is in Toronto and she got a vascular surgeon to give me a requisition for the doppler testing. I have an appointment on Monday to be tested. I'm not sure if the technician is aware of Dr. Zamboni's doppler protocol so I faxed it over to her. Hopefully she'll have had a chance to look at the protocol before I go in on Monday.

I'm not sure what's going to come of it, but I'm confident that if the test reveals stenosis, I will be treated here at home. :D
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Re: false Creek Studies

Postby beerduff » Fri Jan 29, 2010 3:41 pm

TorCan wrote:
Cece wrote:
goddles wrote:The company that makes the transcranial doppler is Esaote.
We are going to look into this doppler.
Our MRV protocol is an adaption for 3T from Dr Haacke


Hopefully it is the transcranial doppler that will make the difference, if you are able to acquire one.

Edited to say: I still see the results from False Creek as being positive for CCSVI. They found 6 confirmed and 15 possibles. There's no control group to show that, on random healthy people, they'd have found 0, but that's the assumption in place from Zamboni's research.


Good morning. My name is Paul and I live in Toronto. I have SPMS and was diagnosed 11 years ago. I went to False Creek to have the MRV test done on me. Vancouver was the only place in Canada that was doing the MRV at the time and that date was December 17th, 2009.
I have an obvious stenosis in the upper portion of my jugular vein. This did not show up on my Ultrasound at all, but it did in the MRV.
I have now found a trial study which is going to India in March to have the liberation treatment done on me. Their is no clinic in the U.S. or Canada that does this treatment at all. This treatment is all out of pocket for me, but I just pray that this is worth it.

This is new for myself, as well as everyone else with MS.

I found this website 2 days ago and it is a pleasure to be chatting with people who understand this :)


Hi Paul
Please someone correct me if am mistaken
From what i can gather reading through this thread.
False creek are not fully doing the procedure as strictly outlined from the link cheerleader kindly included.
If this is the case, is there any chance that they might have missed a secondary stenosis .
I have read on numerous forums of people having more than one stenosis.
I would hate to think you are going to spend all that money and something was missed in your original diagnosis.
I really do wish you a very successful procedure and recovery if you feel confident you have covered all the bases.
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Postby TorCan » Fri Jan 29, 2010 4:48 pm

I nees to thank all of you for your valued opinion's.

At this point, I feel as though have brainstormed all of this and have looked at all the possibilities.

At the Apollo hospital in India, they will know exactly what they are going to be doing and the lady who is putting this trip together has mentioned that 6 other people have had the treatment done on them in Poland with huge success.

The MRV scan that I brought home from False Creek shows everything, as far as the vein's are concerned but the ultrasound doesn't show any problems at all. The fact about that is that the man who did the ultrasond on me had given me his resume right before the test. He was more into proving the CCSVI theory to be wrong as opposed to telling me what is the issue with me. So right now I am set to do another ultrasound in February and this time I will bring the MRV scan with me to show them what I am talking about. I know what I am looking for on the next ultrasound, so I will have to see.

The objective here for me anyway, is to begin showing the medical world at least here in Toronto, what is going on with the CCSVI testing and then treatment. I can afford to go to India and have this completed on me, and I have the time to do this as well.

So for me with my Secondary progressive MS, I am not desperate to find a cure at all as I have grown to get used to living the way that I do. But when this story came out on November 20th 2009, I havent been able to think about anything else since that story aired.

I just can't ignore this potential treatment at all. I couldn't live with myself if I didn't explore this at all.

But I like all of your opinions and I thank all of you :D
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Postby Billmeik » Fri Jan 29, 2010 6:52 pm

go man

if the money doesnt hurt and you think you can show how its done, make it so. Really I've noticed a shift towards training the local guy rather than flying far to get this done, but if they can do it another place to just go is great.
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Who is doing research?

Postby letsfundccsvi » Sat Jan 30, 2010 7:37 am

I've heard that there are "about a dozen" groups who have applied for CCSVI funding from the MS Society of Canada. Does anyone know who these 12 or so would be?
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Postby TorCan » Sat Jan 30, 2010 7:38 am

Billmeik wrote:go man

if the money doesnt hurt and you think you can show how its done, make it so. Really I've noticed a shift towards training the local guy rather than flying far to get this done, but if they can do it another place to just go is great.


Thanks Billmeik. I am glad that you understnd this :D
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Postby mangio » Sat Jan 30, 2010 8:43 am

TorCan,
I read yesterday the first procedure is being done in our own
country in Feb. Hurray!!!!! - I want to be the second person Lib. 8)
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Postby Billmeik » Sat Jan 30, 2010 9:40 am

and about getting ripped off in India. There's just an ancient tradition of bargaining so the prices for most things start about 100% higher than you will have to pay if you bargain politely. You have to drink a cup of tea and work out the details over a half hour or so even if its just a tshirt. If you hurry, you will pay double.
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procedure in Canada

Postby grammastang » Sat Jan 30, 2010 11:03 am

Mangio
Where did you read that the procedure was going to be done in Canada in February?
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Postby TorCan » Sat Jan 30, 2010 12:21 pm

mangio wrote:TorCan,
I read yesterday the first procedure is being done in our own
country in Feb. Hurray!!!!! - I want to be the second person Lib. 8)


Hello Mangio.

Can I ask you where you read this please?
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Postby mangio » Sat Jan 30, 2010 2:48 pm

TorCan,
I will post a message to you. txs/
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Postby newfie-girl » Sat Jan 30, 2010 4:02 pm

Mangio, wow, you have just made my heart go flippity flop, would you please enlighten us all on where you read this informatin and in what province this procedure is being offered. I live in Newfoundland but would certainly travel within the country to have this done. Please enlighten us all :
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procedure

Postby mangio » Sat Jan 30, 2010 4:14 pm

newfie-girl,
pm
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Re: procedure

Postby Jugular » Sat Jan 30, 2010 4:45 pm

mangio wrote:newfie-girl,
pm

Hey Mangio, hook another fellow Canadian up (I won't talk out of school).
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Postby newfie-girl » Sat Jan 30, 2010 4:48 pm

Mangio, I'm sorry i am not receiving a pm from you? Did you send one? I sent you my e-mail address, please respond..Tks again
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