follow up after ccsvi treatment

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

Postby Music » Sun Dec 12, 2010 7:46 pm

jacksonsmommy wrote:I got my follow up doppler in Calgary, but I had to be a bit of a biatch in order to get it!

My GP gave me the referral and then the ultrasound place said they "couldn't" do it. Gave me some crap lines about it being experimental/College of Physicans says no, etc.. My response was that I wasn't looking for a diagnosis of CCSVI, but to make sure my stent was still patent. I also said "If you can't do venous dopplers, why is there a check box on your form for it?".

I ended up having to go up a couple of levels of management. To really make my point, I also sent them a copy of the Zamboni protocol from a vascular journal.

Moral of the story - don't take no for an answer. You have to be your own health advocate.


Hi there,

Where and when did you go for your doppler ultrasound? I went to my GP for a requisition 2 or 3 weeks ago and am waiting for a call from Sunridge Diagnostic Imaging - know someone that went there for a follow-up. Going to phone tomorrow and see what's up???? Heard they were trained properly and did a good job.

Terry(F)
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Postby jacksonsmommy » Sun Dec 12, 2010 8:22 pm

I personally know someone that went to Sunridge. She was happy with them.

My GP however referred me to Canada Diagnostic. They would only do mine at the Chinook location.

I went about a month and a half ago.
CCSVI procedure May 31, 2010
RRMS - Official diagnosis January 2009
MS symptoms since at least 2000 (EBV trigger 98?)
75 - 80% Resistant Stenosis in Left Jugular - Stent
Tokuda Hospital, Bulgaria (Dr. Petrov)
Immediate and substantial results!!
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Follow up doppler in Calgary

Postby lovebug » Sun Dec 12, 2010 8:47 pm

Hi Music! Yes that was me that had the follow up doppler at Sunridge Diagnostic Imaging in Calgary. Dr. Steed is very knowledgeable on CCSVI and has been doing these dopplers on patients that have gone all over the world for there surgeries. It takes about 1 hour for the test. Excellent place!
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Postby newlywed4ever » Mon Dec 13, 2010 8:57 pm

Trish, you have always been such a supportive advocate and I am sorry to hear this latest. I've 'followed' you/your darling as our treatment dates were not too far apart. I went to Albany in Aug and am pretty sure that I have restenosed. I haven't been successful in finding an IR to do follow-up D/US, Zamboni/Haacke protocol. It was suggested to me that I ask Dr S in Albany about a simple ultrasound. He gave me the criteria to ask for. I'd suggest the same to darling man? I know it's not the preferred test but it sounds like it's at least adequate...
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Postby Trish317 » Tue Dec 14, 2010 8:17 am

newlywed4ever wrote:Trish, you have always been such a supportive advocate and I am sorry to hear this latest. I've 'followed' you/your darling as our treatment dates were not too far apart. I went to Albany in Aug and am pretty sure that I have restenosed. I haven't been successful in finding an IR to do follow-up D/US, Zamboni/Haacke protocol. It was suggested to me that I ask Dr S in Albany about a simple ultrasound. He gave me the criteria to ask for. I'd suggest the same to darling man? I know it's not the preferred test but it sounds like it's at least adequate...


Thank you, newlywed4ever. I sent you a PM.
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