New Improvements Made to CCSVI must be understood by all IRs

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

Postby Cece » Mon May 23, 2011 8:59 am

They are both done as part of the procedure. I think that is what you mean? IVUS can only be done from inside the veins and the venogram too is when the catheter goes through the veins.
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Postby carollevin » Mon May 23, 2011 8:59 am

Yes I forgot to mention that the two IRs whom I had heard the most about I wrote direct emails to each and both responsed with having similar rates of patients who had improvements, and similar rates of restenosis and thrombosis (thrombosis being very low). Basically both docs answered all my questions but certainly neither could guarantee me that I won't restenose or even that I will definitely improve. So that didn't really give me that much direction...It seems like I am looking for some sort of guarantee that doesn't exist. I think too because in the past I have had a couple of non-MS-related medical problems that were treated by doctors and got poor results, it makes me more cautious.

The other thing I have noticed--I may be entirely wrong on this--but it almost seems like the people doing CCSVI treatment in Poland are not restenosing as much???? But maybe that is just because I read more stories from people getting treated in the U.S.?

Does anyone know if the technique is different in Poland? Not that I would go there, but just curious.
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Postby carollevin » Mon May 23, 2011 9:07 am

Thanks CeCe,
No I didn't realize that they are done together when IVUS is used....So the venogram is the machine affiliated with the catheter and then once they are in the IRs who use IVUS look at the IVUS readings to make their decisions....

And in contrast for the IRs who don't use IVUS, they just use the venogram alone to make their decisions?

Do I have that correct?

Also, can you give any feedback to my other question--When people do have restenosis, does that generally include brain fog and fatigue coming back. Because those are my two foremost symptoms, if those are permanently restored by CCSVI treatment, then even if my other symptoms like bladder and stiff limbs came back, I wouldn't be that upset. But if everything came back it would be pretty distressing.

Thanks so much for all your help.
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Postby munchkin » Mon May 23, 2011 9:14 am

Thanks for the clarification Cece and for the good wishes.

The cog fog and fatigue have just slipped back in slowly after the vein started to close. I'm not sure how much of it is because of the physical issues I have, kind of which came first the chicken or the egg. Which issue is the cause of which issue.

For myself, the physical issues (I have foot drop, ataxia, bladder urgency, double vision, jerky eye tracking, altered sensation in fingers, and some other less disabling or distracting symptoms) started to get worse again first and then the fatigue and cog fog were much more pronounced.

I'm getting ready to head to the states for my follow-up and will be gone for a few days. If you want more information just ask and I will try to help. It will take a couple of days for me to respond.

I hope this helps with your decision, I know it's a hard and scary one to make.
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Postby carollevin » Mon May 23, 2011 9:25 am

Thanks Munchkin,
I hope your follow up goes well and thanks for your words of wisdom. I don't feel so much of a rush to get CCSVI now, I may take a little more of a watch and wait approach for now--I realize it may cost me more financially as by that time my insurance likely won't cover, but I can't make all the decisions based on money. I am not wealthy but my husband and I could come up with the $10K or so on our own. I think I might rather do that than rush if I'm not feeling ready and still trying to learn more myself about it as the IRs are learning too.
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