Findings at FCSC Vancouver/Canada

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

Postby Zeureka » Wed Feb 10, 2010 10:58 am

eric593 wrote:Well I am not doing well at all with my MS (MS x 25 years) yet I choose to take a "wait and see" approach for at least another few months if not longer because not only are diagnostic protocols still shaky, but TREATMENT approaches have not been adequately developed yet either.

A person can be desperate yet still understand that rushing in may result in cutting off your nose to spite your face! I'd rather wait a bit and have a better chance of them getting it right. And I also don't have money to throw around when they need a better understanding of what they're looking for and how to image it, but even more importantly, what to do about it if they find it.

OK Eric, for me will be similar in the sense that I try to go local, also will not rush to a foreign country where s.o. however opened me the door (and I will always be thankful for that!), but now asks for fees I currently cannot/am not prepared to afford in a rush...
I deep-down wanted the doppler as was still skeptical and curious if all this was true (I actually really believed they would not find anything on me...) and in start could not even get access to it in Italy. Only via my Poland doppler could get access to repeat it in Italy, this is so absurd...as no local GP would otherwise have really believed me and provided support to see a specialist. So I did it even twice...

For intervention will now also try via the healthcare system in Italy...and that takes indeed some time and patience! I guess not even only a few months, but now after having the doppler confirmed in Italy and being inserted in the system, will probably have to wait a year until my turn...
And you're right, if one is lucky, they have already even more experience and one might get better treatment.

If we have the chance of access to a local waiting list, there are reasons and lets take the waiting positive... and hope that everywhere the local situation will improve also for others. I'm only sad for those that do not even have the chance of a local waiting list yet... and still need to struggle to get a doppler with a trained specialist.

Steffi
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Postby Zeureka » Wed Feb 10, 2010 11:18 am

Billmeik wrote:apologies. I knew doctor g had been to hamilton and I was trying to find out the buffalo numbers. With your objections a few days ago I've quietly seen that buffalo's results were going to look more like yours. Remains to be seen how Simka got 95%.Apologies.

Billmeik, I'm curious, how do first 500 Buffalo results % then look like?

Also at first found strange Simka diagnosed in particular often "pathologic valve" problems in the left/right internal jugulars (in fact the day was there 3 patients had the same diagnosis - and he immediately knew where to check me out when started the doppler)...this made me think a bit in the start, but they confirmed me exactly the the same in Italy calling it "stenosis"by valve malformation. Also saw it on Simka's screen and in Italy now got print-outs where you can see it. So seems the jugular vein blockage either by a floppy badly grown valve or other stenosis is simply a very common MS issue.
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false Creek Studies going onto Twitter

Postby goddles » Tue Feb 16, 2010 6:36 pm

I am receiving a fair number of PM's on CCSVI and the status of our centre so to keep everybody up to date on our CCSVI services I have started a twitter broadcast.
Please join...
twitter.com/falsecreekcare

Mark G.
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Re: false Creek Studies going onto Twitter

Postby ms2009 » Wed Feb 17, 2010 2:53 pm

goddles wrote:I am receiving a fair number of PM's on CCSVI and the status of our centre so to keep everybody up to date on our CCSVI services I have started a twitter broadcast.
Please join...
twitter.com/falsecreekcare

Mark G.
thanks
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Postby mangio » Fri Feb 26, 2010 2:50 pm

Thankyou for the updates. Great work and all our best to Dr Simka
and Dr Zamboni. I don't think Dr Zamboni has any idea how
really famous his surname is in our country!

Enjoy.
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Postby Zeureka » Sat Feb 27, 2010 2:19 pm

mangio wrote:Thankyou for the updates. Great work and all our best to Dr Simka
and Dr Zamboni. I don't think Dr Zamboni has any idea how
really famous his surname is in our country!

Enjoy.

Oh well, I think he knows as he is travelling around a lot. And I occasionally ensure he gets links to all the important international media, e.g. the TV ones we collected after Buffalo (if he still reads his emails...or is he maybe also partly ignoring his in-box like Simka due to overfload?!)
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