CCSVI treatment in Canada

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

Postby happy_canuck » Wed Mar 24, 2010 8:45 am

I am not an expert, but the MRI at False Creek has a 3.0 magnet and Surrey's has a 1.5. So it has higher resolution (don't know if thats the right word with magnets, but it's pictures are more detailed).

Bottom line is someone needs to looks inside our veins with venography. I'm hoping my positive scan results contain enough information to open the door to that possibility.

It's a risk (financial) that those who are being scanned are taking because we may need to be rescanned when treatment happens anyway.

But, I feel SO different about my neck and veins now that I know something big is wrong in there. I hold my head differently, sleep differently, monitor my neck comfort differently...I am still getting used to knowing what's going on inside. I think I am so much more informed about my body now and in control of my results.

~Sandra
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />
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Postby Villagemaid » Wed Mar 24, 2010 9:11 am

Thanks so much Sandra!!!

I know what you mean about the financial part. We are SO not in the financial situation to pay $2300 to have the scan done, but pulling out the Visa is the plan. Deal with it later.

I kind of am more aware of how I'm sleeping too - I haven't raised the bed yet as I am a side sleeper and it's hard to sleep on your side at an angle. I also sleep on my back sometimes and like to have my head turned to the side. Add a cat and a husband in there and well, it's not comfortable most times!!! :D

Sometimes the only way I can sleep is by downing a bottle of red wine (not a good thing, I'm sure, but it helps the most)

I will be booking an appointment with FCSC for sometime in May. I'll keep you posted!

Take care,

-VM-
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos
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Postby happy_canuck » Wed Mar 24, 2010 12:37 pm

VM,

We raised our king-sized bed (we have a golden retriever who shares it with us) in November and both love it. I sleep almost exclusively on my left side because of a history with digestive issues. Yes, you can slip a bit downwards through the night, but you get used to it. Neither os us gets up most nights for a trip to the bathroom and we are seeing other benefits as well. We raised the bed 7". Try raising it by 4" or so to start, which helps you get used to it.

Cheers,

Sandra
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />
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Postby Villagemaid » Wed Mar 24, 2010 2:14 pm

Did you just put something under the matress? Our queen bed is just on the bed frame rails. Guess we could get some boards.

I have my MRV and u/s booked for May 4th and 5th!!
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos
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Postby Farmer » Wed Mar 24, 2010 2:27 pm

Hi happy canuck
The Surrey MRI worked for me. I found out what I was looking for.
If a person goes for the procedure they will take another MRI I would think. This way, I save money with going for the cheaper MRI.
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Postby happy_canuck » Wed Mar 24, 2010 4:00 pm

Villagemaid wrote:Did you just put something under the matress? Our queen bed is just on the bed frame rails. Guess we could get some boards.

I have my MRV and u/s booked for May 4th and 5th!!


We have a wood box that used to have flat rails around the inside for the box spring. We took those offand tilted them so the box spring rested at an angle.

Good luck on the 4th and 5th!!

Sandra
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />
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Postby Johnson » Wed Mar 24, 2010 10:27 pm

Villagemaid - I hear you on the red wine, I am working on a bottle right now. The good news is that red wine helps inhibit iron absorption!

I had an ultrasound today at False Creek - paid $499. I get the MRV on Friday for a further $1850 (Yay Visa!). I almost wonder though, is the MRV necessary? The Doc. that did the ultrasound said that according to Simka's metrics, I am a candidate for intervention. I know that Zamboni relies on US, and does not use the MRV. My hope is that Simka, et al, will be able to go by my Canadian scans, and I will not need to be scanned again in Poland. My concern is over the gadolinium contrast agent, more than the money (no, I'm not loaded... Visa!). I don't want to blow out my kidneys.
My name is not really Johnson. MSed up since 1993
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Postby Brightspot » Wed Mar 24, 2010 11:53 pm

Hey Johnson-Perhaps you should contact Dr. Simka and ask if the MRI is necessary at all. If the ultrasound was conclusive, it sounds like they would do the angioplasty anyway, so why an MRV?
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Postby tzootsi » Thu Mar 25, 2010 6:19 am

Brightspot wrote:Hey Johnson-Perhaps you should contact Dr. Simka and ask if the MRI is necessary at all. If the ultrasound was conclusive, it sounds like they would do the angioplasty anyway, so why an MRV?


This is exactly what my wife's IR said. He did a doppler, found a flow problem, and is now going to do the angioplasty. Basically his comment was - why waste time and money doing an MRV, the venogram will find everything, once the doppler justifies it.
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Postby Villagemaid » Thu Mar 25, 2010 7:03 am

Hmmmmm.....now that's something to research.....if I only need the ultrasound, for now, then why pay for an MRV?

I thought you'd need both, but I guess more research might prove otherwise? I kind of thought that I would just go to Poland/Bulgaria and get it all done at once, since they would probably want thier own scans, and why pay twice...lol...

But, if only the Ultrasound is needed to get the ball rolling, then maybe I'll just do that.

JOHNSON<...lol....my wine was replaced with Gin last night...lol.....ever since I made best friends with Ginny one night and Winny the next (gin and wine) it's been great - I actually sleep and am up early in the morning! I don't know if it's being a functional alcoholic or that I'm sleeping better!! :o
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos
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Postby Villagemaid » Thu Mar 25, 2010 7:34 am

There is an interventional Radiologist here in Kelowna. I should get referred to him after I get my ultrasound.....not mention MS......
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos
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Postby Farmer » Thu Mar 25, 2010 9:39 am

[quote="Villagemaid"]There is an interventional Radiologist here in Kelowna. I should get referred to him after I get my ultrasound.....not mention MS......[/quote]
Hi
I tried Kelowna, that time they said they don't have the software. Phone them before you get the referral.
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Postby Villagemaid » Thu Mar 25, 2010 10:00 am

Thanks for the info farmer! Will do!

-VM-
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos
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Postby Brightspot » Sun Apr 04, 2010 11:47 am

Health Canada may be able to assist those who have paid for screening at private clinics and have evidence of vascular problems, but are not getting further screening, and consultations with vascular specialists for assessment and treatment.

I met the director at the Canadian Patient Summit. She was interested, intelligent and wanted to know about CCSVI. So she is aware of the issue.

They deal with concerns from people not getting the care they need. You could address it to:

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
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