So I'm looking at my options and maybe it's best to get the procedure done in Europe or the US; but how do I go about finding someone who has the necessary interest and experience?. Has anyone in the UK had any experience in this and can offer an opinion.
first of all welcome.
i am not from the UK so I can't answer your second question but I can answer the first. i am a caregiver who went to Brooklyn earlier this past fall. we saw Dr. Sclafani. if you do a search here on this forum, you will find he is a member who posts quite often.
when i began my search for treatment, i studied him here. if you read about him you will hear he is the best, he uses IVUS, blah blah blah. I will let you read about him and form your own opinion (as best as you can considering this is the internet).
i will also offer my own experience. as i said, i did read about him (as well as other places) and i was influenced by what i read. i was convinced he was the best. to be honest, he was not my first choice. it was actually The Hubbard group. but everything i read convinced me of his skills.
one thing i couldn't stop thinking was that he was only after the money. Lets face it, a couple hours of his time and it costs $10,000 USD. a study done in Canada shows the actual cost to be closer to $1,500.
regardless of the cost, the evidence is there that this works so off we went. i think it took a couple weeks total time to get all the preliminary stuff done (paperwork, hotel, flight, etc.). my opinion of Dr. S and his staff is okay. i have no complaints, everything was done very well. they even offered assistance in the event that our local Dr. didn't approve of us going to the US (you need prescriptions and tests before you get to the US).
i also read it was better to avoid flying as long as possible afterwards so we decided to drive (what a great decision by the way - we drove home thru fall colors in north eastern US). the hotel and surrounding area was fine. again no complaints although the hotel was not the best but that is not Dr. S's fault.
then it was time to go to see him. Oh my gosh. Its a bloody hole in the wall basement clinic in the slums of Brooklyn New York. what have i gotten into.
okay lets re-evaluate this. look, the houses arround here aren't that bad. actually they look kinda nice. sort of like the old Cosby show on TV. okay, lets go inside.
once inside it was like paradise. yes it is a typical clinic but it was clean and modern, certainly not what i expected after seeing it from the outside.
the first thing was the doppler exam. this is the third doppler my partner had. my opinion - top notch.
next was the consultation with Dr. Sclafani. the agreement was an hour of his time and i was watching the clock to be sure we got the full hour. i think it was 2 hours later that i said "ok, we have to go eat now". my partner commented that he did tests her neuro never did.
in my opinion Dr. Sclafani is very passionate about what he does. yes he stands to make a ton of money from this but he is after more than money. he really cares about CCSVI and the affects it has on his patients. i am saying that honestly without any financial compensation from him or anyone else. it is my opinion based on my experience with him.
the actual procedure was great (again in my opinion). he told us it would be about 2 or 2 and a half hours. he spent over 5 hours. he just wouldn't give up on one problem.
the after care was also great. boy what a difference in his appearance before he started the treatment and after. he looked like he had run a marathon. he spent a long time explaining what he did, what he found etc.
my partner also said she was happy with the procedure (this was her second treatment).
thats my story.
in my opinion, the best doctors are now in the US. if you can afford it I would suggest going there.
having said all that, this is not intended to influence your decision to have the treatment done. it is only a suggestion of where to have it done once you have made the decision to do it. there are many treatment options out there. Venoplasty is only one.