This Is MS Multiple Sclerosis Knowledge & Support Community

Hi Everyone,

I'm following all your stories with great interest and I'm wishing all of those who have had the Liberation procedure or who are embarking on the scans: best wishes, speedy recovery and I pray for many improvements in the coming months.

I'm in quite a lucky situation I suppose as my fathers best friend is a Consultant Vascular Surgeon and Director of Surgery.

He has really taken this on board and fully supports the theories.

He is willing to carry out the Liberation procedure if there are any stenosed veins present, however, I guess because of NHS protocol, red tape bureucracy etc he wants me to approach my GP to arrange scans given the reason.

How? Has anybody tried? What papers should I take? Can a GP request these scans?

I'm waiting to talk to him but wondered if anyone had this experience.

Thanks a lot. I appreciate any replies.

Claire

Official diagnosis 2004 RRMS. But quietly I think it's SPMS.

Hi Claire,

I’ve tried to do something similar here too. There are two immediate problems:

1) CCSVI is not recognised over here (yet) and asking for tests isn’t going to be met with much support.
2) Even if you could find someone over here willing to test you for CCSVI it is unlikely that they would do the tests as per the specific protocols recommended by prof Zamboni (meaning that results may not be very accurate)

My GP therefore agreed that my best option would be to get the tests done in Poland by Dr Simka and then bring the results back here. For now, it’ll be much easier to open doors in the UK armed with irrefutable test results, which would then hopefully open up the way for corrective procedures if required.

Some people have pursued the angle of going to their GP with symptoms that could be interpreted as vein related (headaches etc etc) in the hope of being referred for tests that way, but because of 2 above, I don’t think this would be all that valuable.

Best of luck!

Hi Mutley,

Thanks for your reply.

Have to say my heart dropped when he asked me to see my GP, but it's not over!! I'm not looking forward to going in there and asking. My GP's practice is a place full of dinosaurs and I can't believe they will be thinking 'out of the box'.

Does anyone have any idea how much it costs to go to Poland for the tests?

I need a break and Poland sounds good to me!!

Claire

Hi Claire,

Well there is loads of info on here that you can print out and to take with you and maybe leave with your GP. I'd use the appointment as an opprtunity to share the highlights of Zamboni's work and see if you can get them to agree to do their own research based on some of the links you've left them with, and then see you again to discuss I very much doubt that they will have heard of CCSVI. Mine hadn't thats for sure.

I think tests in Poland work out at about 200 Euros plus flights and accomodation, so not that much really.

Mark.