Need advice RE: venography

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

Need advice RE: venography

Postby CureIt » Mon Sep 27, 2010 6:09 am

Hi everyone,

First of all, thanks for creating such an amazing community online, thanks to each and every one of you who has compiled so much information and placed it here for everyone to see. My dad has MS, he currently can not walk and is in bed. His mental state has also been noticeably affected. I really hope that CCSVI is the miracle that can at least stop his progression.

I have some questions regarding CCSVI, diagnose and treatment and would really appreciate your help. I apologize if some of the questions have already been answered, I really did search, but could not find answers to following:

What are different ways of diagnosing CCSVI? Are there different methods of venography? Which one is the most recommended method?

Can the venography be done by a clinic that does not necessarily know about CCSVI? If so, what information do I need to provide the clinic to do the test or the imaging properly?

Do you by any chance know where in Ontario, Canada - or anywhere in Canada this test be done?

I guess this is the first step, and after the imaging is done, then I can start thinking about sending the results to one of the doctors that works with CCSVI but I'll research and ask about that later.

Any additional information is greatly appreciated. Thank you very much and I apologize for not being able to look this information up myself yet.
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Postby Algis » Mon Sep 27, 2010 6:52 am

As far as I can tell; screening (diagnosis?), treatment has to be done by trained personnel. That is why so many Canadians goes to Poland, Bulgaria, India, USA? (others maybe).

Please anyone feel free to correct / amend the above.

My best of luck to your Dad :)
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Postby garyak » Mon Sep 27, 2010 8:03 am

I was tested with MRVs at both Hubbard in san diego and BNAC in Buffalo this summer. I was found to have reflux in both internal jugulars while laying on my back but both series of tests revealed my jugulars were wider than ave with no apparent stenosis- until I had Catheter venogram in san diego where my right internal jugular was 70% stenosed down in the lower portion. Ballooning that has helped me significantly over the last week since having it done. Your dad needs to have a catheter venogram. PM me for more of my personal experience- welcome to thisisms!
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Postby Blaze » Mon Sep 27, 2010 8:51 am

Testing should absolutely be done by someone trained in CCSVI. Technologists at Barrie Vascular Imaging in Barrie Ontario (http://www.barrievascularimaging.com) and at Toronto Centre for Medical Imaging (www.tcfmi.com) in Toronto and in Port Perry are trained and capable of doing Doppler ultrasounds for CCSVI. Toronto and Port Perry locations accept OHIP. Barrie does not charge the patient for the service. Both have waiting lists.

My understanding is it is not possible for someone with MS to have a venogram for CCSVi in Ontario or Canada at this time.

Good Luck.
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Postby CureIt » Mon Sep 27, 2010 10:15 am

Blaze,

So does this mean that Barrie, Toronto and Port Perry all do the Doppler ultrasaunt test?

Noone in Ontario does MRV? (MRV is venogram right?) How about rest of Canada?

Is Venoghraphy/MRV better than the Doppler test?

Are these the only 2 methods that are used?

Thanks guys for your help, really appreciate it.
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Postby Blaze » Mon Sep 27, 2010 12:09 pm

Yes, the Barrie, Toronto and Port Perry locations all do Dopplers
ultrasounds. They are all using the Zamboni protocol. The Doppler ultrasound is a short, non-invasive test, but must be done by properly trained techs using the right equipment to be effective. A referral from a physician is required by these centres.

An MRV does magnetic imaging of the veins. It should be done according to the Haacke protocol for CCSVI. It can be done anywhere in Ontario that MRIs are done with a requisition from a neurologist, but I don't think many neurologists in Ontario are making referrals. I don't know if it can be done with a requisition from a family doc.

Someone else posted that he was considering being tested in Mississaugua for $2200, but I don't know where or for what procedure. I think False Creek Health Centre in Vancouver is also doing MRVs on a fee for service basis. Before you pay that kind of $, I would see if you can get some information from someone who has had it done at one of those locations.

Venography (or a venogram) is a more invasive procedure involving injecting a dye via catheter into the veins. It is considered the gold standard for determining CCSVI. As I understand it, venograms are not available for CCSVi in Ontario or in Canada at this time. Venogram must be done prior to treatment for CCSVI. Most of the physicians outside of Canada who are treating CCSVI do venography immediately prior to treatment.

Maybe someone who has actually had the procedure can give you more information on venography.
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Postby CureIt » Mon Sep 27, 2010 12:45 pm

So once again, to confirm: there are 3 ways to determine if someone has CCSVI: Doppler Ultrasound, MRV and Venography. Those are 3 different things, correct?

So would it be safe to say, that Doppler ultrasound is good enough test to determine whether or not someone could be suffering from CCSVI? How important would it be to have MRV done too? Do these two accomplish the same task with similar accuracy?

Is it safe to say that venography (third method) is unnecessary until you actually go for the liberation procedure?
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Postby Cece » Mon Sep 27, 2010 1:04 pm

CureIt wrote:So once again, to confirm: there are 3 ways to determine if someone has CCSVI: Doppler Ultrasound, MRV and Venography. Those are 3 different things, correct?

So would it be safe to say, that Doppler ultrasound is good enough test to determine whether or not someone could be suffering from CCSVI? How important would it be to have MRV done too? Do these two accomplish the same task with similar accuracy?

Is it safe to say that venography (third method) is unnecessary until you actually go for the liberation procedure?

Yes, three different things. I refer to the third as 'Catheter venogram' to avoid confusion with the second (MRV, which is an MRI of the veins).

The Doppler ultrasound is the only imaging that was used by Zamboni in his original research. It is hard to say which of the MRV or the doppler ultrasound is more accurate, although of the two I'd go with the doppler in the hands of a trained expert. They measure slightly different things but both are useful. Neither are conclusive: if the MRV or the doppler ultrasound both come up clear for CCSVI, a catheter venogram may still turn up CCSVI and has for some people here.

Some doctors, notably Dr. Siskin for patients travelling in, dispense with the imaging altogether and go straight for the catheter venogram.

The ratio of people with MS who also have CCSVI seems to be extremely high, from both all the reports here and Dr. Zamboni's original research.

Nearly all Canadians who have been treated have had to travel to get treated. Is your father capable of travel? One way to go at this is to pick the doctor you'd have him travel to and then find out if the imaging is included in the package or if the doctor will accept imaging done from another clinic.

Best wishes and welcome to the site!
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Postby Blaze » Tue Sep 28, 2010 5:19 am

I had both a Doppler and an MRV. I found the results of the Doppler to be far more comprehensive. The Doppler was done by someone in Barrie who trained with Dr. Zamboni. That technologist was the first in North America to train with Dr. Zamboni. She is authorized by Dr. Zamboni to train other techs. The technologists in Toronto and Port Perry were trained by her, so they are trained in the Zamboni protocol.

Cece is correct. Many centres require their own testing, but a Doppler by a trained person is a good starting point. I found the information in mine to be invaluable.

Good Luck.
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Postby Blaze » Tue Sep 28, 2010 11:03 am

This is to update information I provided yesterday. A new thread has started today that OHIP will no longer pay for Doppler ultrasounds for CCSVI testing, so Toronto Centre for Medical Imaging is now charging $250 in their Toronto and Port Perry locations.
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Postby dania » Tue Sep 28, 2010 11:22 am

I went to Bulgaria to have the procedure. I had not been tested before I got there. They found stenosis in all 3 veins. But many people that I met there, their ultrasound showed no stenosis. But each one of them when the venogram was performed stenosis was found. They thought that with my ultrasound the stenosis was more severe on the right side, but when they performed the venogram the stenosis was much more severe in the left jugular.
I personally feel having an ultrasound before going to the place where they perform the procedure is a waste of money. They will do it there and charge you for it. And many people get false negatives with an ultrasound.
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Postby esta » Tue Sep 28, 2010 1:15 pm

I whole heartedly agree with not wasting a cent in this country, trained or not, a venogram is the only true test. save thousands of $ and get your dad out of here and get the procedure done elsewhere. most ms people have CCSVI, so just do it. we have one life, live it. just do the research on where to go.
strong words, with no idea of your circumstances, i just wish him all the best...
PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia
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Postby garyak » Tue Sep 28, 2010 7:43 pm

I agree , get the venogram
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