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


Postby daytrader » Thu Mar 18, 2010 9:31 pm

People, we can not speak of this anymore. Get up and get a referral to a cardiovascular surgeon. Read my speak with adam1 or whatever. This is real, we are time limited, and we are people. I, for one, will not/am not waiting for the looooooooooonnnnnnnnnnnnggggggggg drug delay. We do not have time to spare, at least not me, and need to act. I, after this is over, plan to assure that all know to have an mrv with the mri next visit.....that is my plan. My name is Dave if you see me fighting for us!

stay well and stay strong,

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Postby thisisalex » Fri Mar 19, 2010 7:10 am


you have to go to interventional radiologists! and bring the diagnostic protocols and the trial papers with you!

keep going mate :)
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Postby frodo » Sat Mar 20, 2010 2:25 am

thisisalex wrote:Dave,

you have to go to interventional radiologists! and bring the diagnostic protocols and the trial papers with you!

keep going mate :)

In fact, I would go to an interventional radiologist (IR) AFTER diagnosis. Try first to get a diagnosis done in one of these places and then take it to a local IR.

To be treated by a local IR has several advantages

- you will be at home sooner
- you will not have to travel for a follow-up (surgery needs revisions)
- your insurance will pay at least part of the surgery
- you will spread the word about CCSVI in your home town
- you will help to keep the diagnosis centers free. Diagnosis is more difficult than surgery and there are not too much centers that can perform it.

Good luck
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Postby Cece » Sat Mar 20, 2010 12:54 pm

Problem with that solution is that the diagnosis is best done by a venogram and, if you're getting a venogram, the IR is right there in your veins and can balloon at that time.

Local is best and very good point about clogging up the diagnostic centers but still we have to do what we have to do to just get this taken care of!! :)
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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