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Posted: Thu Jan 28, 2010 7:01 pm
by 2mspatient
Hi Sonia52,

I asked the same question. If you read the comments you can see some posetive feedback.

Posted: Fri Jan 29, 2010 6:14 am
by Jaguar
Regarding the protocol, I brought in Dr. Simka's - he didn't look at it the first time. The second time I went in (a few days later) he had done some reading and knew what he was looking for. He had also started testing non-MSers.

He is self-trained regarding CCSVI... but... very smart and working with some very interested physicians.

As with others who have not had the benefit of training from Zamboni/Simka et al, you have to recognize that if he sees something - that's probably true, but if he doesn't... well that requires more investigation.

ultrasound last night

Posted: Fri Jan 29, 2010 6:35 am
by savannahstarr
I had my ultrasound done yesterday evening by Dr Michael Baranye at the WSMI clinic. He also works at The Montreal General Hospital up the hill. he seemed to know what he was doing although I forgot to ask if he could see/checked the azygos vein. It seems I have irregular flow (blood going the wrong way) and it flows way too fast in places (which may indicate a stenoses somewhere). He found my veins intriguing i n how troubled they seemed. I can't wait to go see my GP when she gets the report. I haven't been able to view the cd of the test -yet- as I have a mac and you need windows to view it. My next step is to get an appointment with a vascular surgeon and... or maybe I'll end up in India... I hope that CCSVI now being considered a congenital disease by the International uni0n of Phlebotomists will help move things along.

Posted: Fri Jan 29, 2010 6:58 am
by Jaguar
he is not a dr.

Posted: Fri Jan 29, 2010 7:07 am
by savannahstarr
right. typo...just going too fast.

Posted: Fri Jan 29, 2010 7:20 am
by Jaguar
I agree with India - I have an appointment more than a year from now in Poland! Who can wait? The Indians will get it together very shortly - I feel they are almost there with the surgery (I don't think I would go right now - but in a month? Maybe...

I wish there was some way to get a handle on surgery in Canada, but it just seems so far away...

Posted: Fri Jan 29, 2010 9:07 am
by 2mspatient
Thanks savannahstarr for the update.

So it seems it is worth it to check even if they may not know the protocol well!

I just did the two blood work (aCL & LA) for HS today.(http://www.members.shaw.ca/tiderington/hughes.htm )

They wil let me know the result by the end of next week.

I'll keep you posted.

Posted: Fri Jan 29, 2010 3:13 pm
by sonia52
Private clinics in Ottawa and Gatineau will soon offer the real testing (Zamboni protocol). More information in a couple of days.

Posted: Fri Jan 29, 2010 3:17 pm
by 2mspatient
Thanks Sonia52! Please keep us posted.

Posted: Fri Jan 29, 2010 3:36 pm
by sonia52
Sure. I'll do.

Posted: Sat Jan 30, 2010 10:05 am
by babiezuique
Michael told me he could not see the azygos with the color doppler... beause it is deep in the back....
Maybe we can see the azygos with the mrv


Please.... Try to get prescription from an open minded doctor to meet a radiologist interventionist in your place

My gp gave me this paper and i am in a waiting list to meet a goo one in the montreal area....

ASK YOUR DOCTOR A PRESCRIPTION TO MEET A RADIOLOGIST INTERVENTIONIST.....

Barbara

Posted: Sat Jan 30, 2010 11:51 am
by 2mspatient
Hi Barbara,

Shoukld I meet A RADIOLOGIST INTERVENTIONIST for MRV to check Azygos vein?

Please advise.

Thanks.

MRV

Posted: Sat Jan 30, 2010 12:49 pm
by savannahstarr
Michael Baranye said somrthing about that they were working on being able to do the MRV with the right protocol. As I understand it no one does the right one yet - am I right? Please tell me I'm wrong. Even if you get a doctor to write you a requisition. I don't think it makes a difference if an interventional radiologist writes the requisition - unless he's figured out the protocol and is doing it himself...

Posted: Sat Jan 30, 2010 12:56 pm
by babiezuique
I'm just like you... i dont know... Actually nobody does the mrv with the good protocol in Quebec:) I dis the doppler at the wesmount square...The man told me ''live'' while testing that i had reflux....and visible trouble with my both jugular.... so I'm doing what i can to see the good person to take some of this in charge...

barbara

MRV protocol

Posted: Sat Jan 30, 2010 1:00 pm
by savannahstarr
Found something I'm gonna print and bring with me to doctors...
looks promising, why didn't I find this before?!