Please advise as to Positives/Negatives ref to CCSVI

Everyday living
1

Good Afternoon all,

I have a few fellow MS Diagnosed friends who are considering to go to Polland and pay £5000 for this treatment.

I have never heard of it and was hoping that you could advise as to it’s merits and success ratio…

I would also appreciate knowledge on side affects etc.

Many Thanks

Survivor

2

Hi

I was dx PPMS in March 2011 and had CCSVI in Bruges May 2011. My balance certainly improved for a while but now I am back to where I was prior to the procedure. My left jugular was blocked and a balloon inserted via my groin. I think the whole procedure took around 1.5 to 2 hours and was painless.

At the time I thought it was going to “save me!” but sadly that wasn’t the case. Would I spend that money again knowing what I know today? Probably not tbh. I did lots of research prior to going ahead and as I said I think it worked for a while. I wish you well in making your decisions and if I can be of any help please just ask.

Steve

3

Well, Survivor, you have just opened the lid on a good old fashioned can of worms (again).

CCSVI works for some people and not for others. With the exception of one clinic in Belgium (“Ours is a once-only treatment”) us seems to be generally accepted that the treatment will need to be repeated after a few years. Most of the clinics carrying out the anti-CCSVI procedure, seem to be based in India or in Eastern Europe.

In a recent thread, whammel gave a link to the research being carried out in this area. You may have to search for this, but I think it was within the last week.

Alternatively, you can go to the following thread on this forum, and see just what sort of view appear and what sort of argument is generated by CCSVI:
http://www.mssociety.org.uk/node/628233?page=1

Geoff

4

Add to my previous post, whammel’s link was in this thread:

http://www.mssociety.org.uk/node/642266

Geoff

5

When I’ve got the money I’m off to Poland and having balloons and stenting. 11 years in and I can weight bear for about a minute and the NHS have absolutely nothing to offer me. I’m on the edge of the abyss, and I can’t stand up to spit into it.

NICE are conducting a study into CCSVI,by asking 450 people about their experiences with the proceedure. Bravo NICE .What a load of money saving.ollocbks,cowtowing to the drug companies and the institutional ignoral of MS for 50 years

Wb

6

I’ve had the ccsvi procedure done twice. First at the Ameds clinic in Poland. Worked well for a few weeks and then back to square one.
Second time, through the Essential Health Clinic with treatment in Edinburgh. Tested after six months and mobility and cognitive measured as 20% improved, although I think I’ve regressed since.

John