CCSVI study here in the UK

lilaclomax · Post by **lilaclomax** » Thu Jan 28, 2010 12:21 am

Some very positive news - I have been sent details of a study that is currently being set up here in the UK for the diagnosis of CCSVI.
The names I have so far are for a neurologist and a vascular surgeon, both of whom are researching CCSVI... I will update once I have more details.

sbr487 · Post by **sbr487** » Thu Jan 28, 2010 12:41 am

The last one week has been very +ve for CCSVI. I think CCSVI has crossed that threshold and has started reaching a certain level of acceptability now. But let us not lower our guard even for a moment.

ClaireParry · Post by **ClaireParry** » Thu Jan 28, 2010 1:24 am

Thats amazing news!! I assume these Drs are happy to learn the correct protocols? I can't believe where a couple of days has got us. It's certainly cheered up a wet, murky, grey UK morning!!

ClaireParry · Post by **ClaireParry** » Thu Jan 28, 2010 1:27 am

lilaclomax - I hope you get some positive responses on the UK MSS website. They don't seem to be very forward thinking to me?? I may be wrong!! I hope I am.

Perky · Post by **Perky** » Thu Jan 28, 2010 2:02 am

This is so exciting - I hope it goes ahead soon.

I don't look at the MSS message boards much any more - I find it really frustrating how indifferent and ignorant many of the people there are about CCSVI. They seem more interested in filling the boards up with trivial chat and personal messages to each other.

MSUK · Post by **MSUK** » Thu Jan 28, 2010 2:04 am

Hi lilaclomax

Any chance you can send me details??

kind regards

squiffs

ClaireParry · Post by **ClaireParry** » Thu Jan 28, 2010 2:07 am

Perky - I'm glad it's not just me who feels that way!!

Perky · Post by **Perky** » Thu Jan 28, 2010 2:15 am

Claire - I once made a comment saying the same on the MSS board, after an intelligent post about CCSVI was quickly pushed down the boards by the inane blathering.

lilaclomax, can you please let me know the details as soon as you are able? I am in the West Midlands but I'd be happy to travel anywhere.

Edit: as if to illustrate my point, lilaclomax today posted a copy of this topic on the UK MSS. It has already been shunted down the board by threads about someone's personal problems with their daughter, the weather, moving house and one asking for advice on buying a hoover. It would be funny if it wasn't so sad that so many people on there are unaware of/don't care about CCSVI.

ngocky · Post by **ngocky** » Thu Jan 28, 2010 2:24 am

Thats brilliant news lilaclomax. We look forward to hearing all the details. We dont mind travelling either.

Perky and Claire. Its so true about the UK forums. Hardly anybody talks about it on there. Some people dont even know what it is yet which is such a shame.

Nx

lilaclomax · Post by **lilaclomax** » Thu Jan 28, 2010 2:32 am

MSUK site... call me cynical but I get the feeling some on there are happy to bury their heads in the sand (dare I even say this - the odd few even enjoy being part of the MS community). I myself will go down fighting if that is what it takes! I only post on there for the few pms I get and then re-direct people here... where people find out the facts and figures and can make up their own minds about CCSVI.

With regards to my contact, he is the only consultant out of the hundreds I have contacted to reply in a positive way and within 1/2 hour of my email. I will say though that he has his own private practice which my be a coincidence or not (still very sceptical about the NHS involvement). The study looks to be only about diagnostics but it is a start and if I have a scan here in the UK that shows a stenosis or other vascular defect I will go armed with all the information to my healthcare company and fight for payment of the treatment be that here or with Dr Ludyga.

ClaireParry · Post by **ClaireParry** » Thu Jan 28, 2010 2:47 am

lilaclomax - I have contact with a Vascular Surgeon who is a close family friend and also Director of Surgery at the trust he works for. He is very switched on about CCSVI and I am waiting for him to come back to me regarding the news from the Consensus Confrence.

I don't hink it's fair to give his name out yet, but I'm off to Poland 8th Feb for diagnostics and he said he will do whatever is needed!

I really hope he will help push things forward if my trip proves positive for CCSVI.

Claire

lilaclomax · Post by **lilaclomax** » Thu Jan 28, 2010 3:06 am

Great news Claire, there are people out there but as you said for now it is best not to publish the names until they have everything set up and ready to go. I am due in Poland on the 16th March for the diagnostics and then surgery on the 17th, if I can get things moving here first then that would be so much better.
I am hoping for a reply either today or tomorrow with more details that I can hopefully share.

Jennie

MurielC · Post by **MurielC** » Thu Jan 28, 2010 5:17 am

Lilaclomax keep us posted on progress.

I'm hoping what starts in the UK, that Ireland will follow.

My brother's GP is friendly with a UK doctor who has been following Zamboni's work and is hoping to be involved in the clinical trials in the UK. I have no more details.

Edser · Post by **Edser** » Thu Jan 28, 2010 7:37 am

Good Afternoon TiMS & lilaclomax,
I really hope the UK push ahead with CCSVI & as MurielC say's "I'm hoping what starts in the UK, that Ireland will follow" I've a pain in my head TRYING to get Ireland to listen to me ragarding CCSVI.I've another appointment with my NEURO 02/02/2010 & i'll see will he listen to me this time.Keep up the excellent work UK.
Slainte Mo Chara
Edser & Anna

Hoppy · Post by **Hoppy** » Thu Jan 28, 2010 8:43 am

I also look at the MS boards and find them "compliant". I see my neuro on 8 Feb so any further info on positive responses from neuros & surgeons in the UK would be useful ammo to see if I can get him interested. Thanks a lot. Forwever hopeful. Linda