Scans/Tests before Liberation & Apres Procedure

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

Scans/Tests before Liberation & Apres Procedure

Postby Interrupted » Wed Jun 23, 2010 6:39 pm

(1) I'm just wondering how many people successfully manage to have dopplers/MRI's etc. to prove there is the venous problem before arranging their trip abroad?

I have tried and failed on this score, but the more I read, the more it seems like everybody else has managed to attain them.... somehow :(
All i've achieved is being told to steer well clear and that they won't even think about it. Or they couldn't even if they wanted to.

Bearing in mind i'm just currently arranging a full package trip with Simka, is it ridiculous to spend all that money and potentially be one of the 5%? Or should I keep fighting to get the scans done here (UK) before paying a fortune for something I might not even have. Well I guess that's the risk/reward but i'm just curious to know if i'm the only one who doesn't have the proof before paying/going?? 8O

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(2) Is there a complete rundown of what has to be taken/done after the procedure anywhere?

I have a basic idea but the protocols/thinners seem to be different for every person. Is this so? Or does the Polish clinic have a set protocol for medication and further scans?

I'm also worried as thornyrose is in their thread about not having a doc around me that's even vaguely on board, so i'll follow their thread for info on what to do in this circumstance with regards that worry.

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(P.S. Have just read the thread about stent blockages and have now swung from excited to terrified!!! lol)
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Postby joanp » Thu Jun 24, 2010 7:45 am

my thinking would be that if you are going to dr simka - do no other testing beforehand. if the people are not skilled enough or not using the right eqpt, they might not find anything. You likely have CCSVI because the vast majority of people with MS have it.

and we know the gold standard is actually going in there through the groin and seeing first hand what the problem is and then fixing it.
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Postby Interrupted » Thu Jun 24, 2010 5:41 pm

Thank you Joan, good advice :idea:
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Postby Cece » Thu Jun 24, 2010 7:21 pm

I agree with Joanp too. I think the thing to ask would be if you would cancel the trip if you had ccsvi testing done and it was negative. The problem with canceling in that scenario is that, unless you went to an expert like Simka for the testing, there is a real chance that the technician would not know what they're doing. There are also stenoses that do not show up on the imaging. But I can also see where there would be peace of mind in knowing that you've tested positive for ccsvi before embarking on such an expensive journey. Best wishes with whatever you decide. :)
"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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