CCSVI

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

CCSVI

Postby grindlator » Tue Sep 21, 2010 3:19 pm

Hello

My wife has MS and we are on the waiting lists for the clinics performing the liberation procedure in Bulgaria, Poland and Germany. Does anyone have any input over whether one clinic would be better to go to than another?

thank you
Peter
User avatar
grindlator
Newbie
 
Posts: 5
Joined: Thu Sep 16, 2010 3:00 pm

Advertisement

Postby Cece » Tue Sep 21, 2010 5:48 pm

I am cautious about Bulgaria. I get the impression that they are a bit rougher with the ballooning. There was also a report of severe clotting after a treatment in Bulgaria that culminated in open-neck surgery on the jugular at a later point in time. There are threads here on all three of these sites, if you use the search function.

Wishing the best to your wife with this procedure! It does seem like for many it is not a one-time-and-done deal but that there is a need for a second procedure or follow-up.
Cece
Family Elder
 
Posts: 9022
Joined: Mon Jan 04, 2010 4:00 pm

Postby Johnson » Wed Sep 22, 2010 2:09 am

Cece wrote:...

Wishing the best to your wife with this procedure! It does seem like for many it is not a one-time-and-done deal but that there is a need for a second procedure or follow-up.

I concur with Cece.

I feel good about going back to Katowice for a second round, and I am a pretty discerning person. I have no experience with other organizations, so I can't comment on them. I would recommend Euromedic though.
My name is not really Johnson. MSed up since 1993
User avatar
Johnson
Family Elder
 
Posts: 979
Joined: Tue Dec 01, 2009 4:00 pm
Location: Ucluluet, BC

Postby nicknewf » Wed Sep 22, 2010 6:28 am

I saw Dr. Petrov speak at SUNY - he reported the best success rates as compared with Kuwait and Albany - but Poland and Germany were not represented. Of those at SUNY: Kuwait was the most aggressive with ballooning - but really took their time with it as they were not allowed to use stents at all (the folks in Kuwait have an international clinic in Egypt); Bulgaria used the second largest balloons; and Albany used the smallest balloons and were questioned by the audience about undertreating.

It seems natural to think that complication rates might be linked to balloon sizes, but there was no data provided to suggest this. There was data to suggest that success rates (i.e. percentage showing improvement at one month) was proportional to balloon size. In any event, it's still very early days - and probably too early to tell what works best.

What was abundantly clear, was that you want the most experienced individual doctor possible - the more procedures these guys and gals do, the better they get.

There are different physicians performing the procedures in each centre - and individual physician complication rates are more important from a risk assessment perspective than centre complication rates where multiple physicians are doing the work. This is an important question to ask - who will be doing my intervention and what is the doctor's personal complication rates in doing the procedure?

The problem noted above by Cece [also] occurred to a friend of mine at Albany, where they use smaller balloons, and generally seemed to have low complication rates. Sadly, one of her veins is now completely thromobosed [sic?] - and no one back here in Canada is allowed to help her. [That having been said, my wife is still going to Albany on Monday - and we can trust that these doctors learn from their mistakes - having honestly reported them.]

I think Dr. Simka in Poland is rumoured to have the better success rates; and he has almost certainly done the most interventions. But is he the doctor who will be performing your procedure if you go to Poland?

The success rates quoted for Germany were the lowest I've read 50% showing immediate improvement, 45% showing no difference, 5% getting worse - but these numbers all come from early July - and everyone gets better with practice.

Best of luck with getting a time and having a good experience
User avatar
nicknewf
Family Member
 
Posts: 84
Joined: Mon May 17, 2010 3:00 pm
Location: St. John's, NL


Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service