CCSVI - Test and doctor instructions question

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

CCSVI - Test and doctor instructions question

Postby sou » Wed Apr 29, 2009 4:05 am

Hi all.

I have scheduled an appointment with a vascular surgeon who studied in Italy. The appointment is on May 18th. I will present him with the Zamboni studies and I was thinking about not mentioning that I want to monitor myself because I have MS, but because I feel that I may have an additional venous insufficiency.

I have found out that MRV is non-invasive, apart from the "dye". Can this be enough? Can it depict all veins of our interest?

My insurance will cover these tests, thus cost is not an issue. Supposing that MRV reveals some stenoses, do I really need to have to test for reflux using Doppler?

Thank you all!

sou
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Re: CCSVI - Test and doctor instructions question

Postby cheerleader » Wed Apr 29, 2009 5:35 am

sou wrote:Hi all.

I have scheduled an appointment with a vascular surgeon who studied in Italy. The appointment is on May 18th. I will present him with the Zamboni studies and I was thinking about not mentioning that I want to monitor myself because I have MS, but because I feel that I may have an additional venous insufficiency.

Terrific news, sou. Headache and edema are the code words for venous insufficiency in the CNS.

I have found out that MRV is non-invasive, apart from the "dye". Can this be enough? Can it depict all veins of our interest?

Yes. The MRV should scan your veins from the cerebrum down to the azygos....from head to chest. It shows everything.

My insurance will cover these tests, thus cost is not an issue. Supposing that MRV reveals some stenoses, do I really need to have to test for reflux using Doppler?

No. The reflux test was to show signs of stenosis, so Zamboni's team could get permission to do venography. Zamboni's ethics committee needed this in order to do the invasive test. If your MRV shows stenosis, there is no need for further proof of CCSVI, unless your doctor feels it's necessary. Just doing MRV will keep insurance costs down, and will locate the precise location of stenosis, in case endovascular surgery is needed.

AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby sou » Wed Apr 29, 2009 6:51 am

Hi.

Thank you for your reply!

Provided that I find stenosis, I will have a long discussion with the surgeon about treatment options, but I am cautious about what to do. Maybe wait, since my MS appears stable for the time being, in terms of progression. January is not that far!

Thanks again!

sou
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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