acol wrote:Hi Dovechick
I'm fairly new to this site and still feeling my way. There seems to be quite a sizeable number of posters from the UK. At some stage it might be useful to have a specific thread devoted to people in the UK who are trying to get treatment for CCSVI. I know that there is a dedicated thread created by GiCi for the first person in the UK who had the 'liberation procedure'. Perhaps we could use that thread? I think it would be interesting to get some ideas of the number of people in the UK who are trying to get this treatment.
On the other hand working independently does, arguably, have the advantage of spreading the new 'gospel' and forcing key professionals to begin to understand what is happening in the wider world. What do people think?
I've been aound for a while but on another forum, so am a newbie to this one. I know of and have corresponded with three other UK members who have or are currently going through the procedure. Gici has had his procedure done in Belfast (UK) but he is a special case as he is a doctor himself and managed to convince some colleague to do that procedure for him. These doctors/surgeons have declined to do any more at present.
So the other two people I have corresponded with have had to consult Dr Simka in Poland, (the same doctor who did Erika's Liberation).
The two other members are LR1234, who obtained her MRV privately (in other words she paid for it herself) in the UK having failed to convice any one in the NHS that this would be necessary for her treatment. The people who did her test said there was nothing wrong with her veins, but she sent the images to Dr Dake who identified some problems. She is undergoing the procedure around now. The second member I have been in touch with is Wonky1 he is going to Poland in the beginning of December and I am hoping that Ella might make it in December also as I have been in touch with Dr Simka and told him I would like to have the tests done in Poland as it seems that no one in this country is trained to identify the areas of difficulty.
Unfortunately the NHS is not going to pay for any of this treatment at present, so we are all having to pay for the procedure out of our own pockets. I imagine that in the future this procedure will be available in the UK under the National Health Service, but it will take a while and we don't have time to waste... Ella is still steroid responsive, but I don't know for how much longer...
So maybe the thread should be centred around the location of the procedure rather than where the members live. What do you think?
Michele, warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.