Thanks, Anon.
Agree! few experts & seemingly none who do it all!
Yes, I’m in the UK in North Wales. No one has known about it here until I analysed my own scans as they said nothing wrong. ENT & Neuro involved. They have now acknowledged ES and IJV compression. This upcoming MRA is to check arterial side, if any issue with carotid being compressed/dissected which could cause stroke etc, so grateful they decided to look to that (though my symptoms come on worse when moving & slight exertion, which probably wouldn’t show on scan?). I also suspect hyoid horn stabbing into vessels & possible CCI, that’s just me wondering as it feels like it. Have only been offered so far an intra-oral procedure by ENT to remove tonsil and chop end of styloid off (sticking into throat cavity), which I’m not going have done, as it wouldn’t deal with things properly & not in a position to have an op anyway.
Like you say, it’s confusing who to ask about it all linked together.
That’s bad luck having a ‘leak’! hope very much whoever you see who knows about that can put your mind at rest and deal with it with minimal intervention…
Thanks very much for your good wishes. Looking forward to hearing how you get on. Good Luck!
We did have at one point a cluster of people diagnosed with ES in Wales, it was weird…I think they had surgery with Mr Thomas so it’s such a shame he’s not doing surgery now. One member I think was trying to get publicity about it & did an interview…
There is the Swan clinic, I don’t know if they would be any help:
Syndrome Without A Name (SWAN) clinic - NHS Wales Executive
Thanks Jules. How intruiging!
I’ll try and find out about it.
On a light note, ‘Eryri’ here in North Wales (English called Snowdonia) means place of Eagles ha ha.
Yes, pity about Mr Cellan Thomas…
Thanks for your help again
I didn’t know that, I’ve always wanted to climb it but not sure I’m fit enough right now 
Would need to train…are you nearby?
Hi Jules, Eryri (Snowdonia) is a National Park in North Wales (about 800 sq. miles), with the highest mountain being Yr Wyddfa (Snowdon), with 5 different paths to get up it of varying length and difficulty. Not high in World terms, around 1000m, worth doing, though is far too popular and other mountains in Eryri better choices (in my view)! I’m no expert at all & can’t do anything physical like that these days. I live in the general area! 
Are you in the UK?
I want to come hike the trails in Eryri even if they’re popular! I understand how you feel about too many people on some trails, though, as there are some parks near where I live in the US that used to be wonderful for hiking, now the trails are so busy it’s like rush hour on the freeway at certain times of the day on the trails. I guess it’s good people have learned the value of exercise & fresh air, but I miss the old days before hiking was so popular!
Yes, it’s good if more people enjoy the outdoors - and fortunately there are enough great less-well-known areas too, so not like Piccadilly everywhere! 
Yes, I’m UK , I’m in Suffolk, across the country from you in the most Eastern point…no mountains here, very few hills even It’s good as you say that people do enjoy the outside, but I agree it sounds really crowded, since covid I gather?! We went to Skye too years ago but it sounds as if it’s the same…maybe I should do what my idiotic son did & climb it in January in the snow! He was a bit prepared but still…
I hope you have access to some of the beautiful areas even if you feel terrible, nature has a bit of an uplifting effect…
Great you’re in the UK! Yes, covid changed a few things…! Good idea to go more out of season, though some foolish folk go up the mountains here poorly equipped & end up calling out the mountain rescue teams.
Thanks Jules. Feeling pretty horrid currently. More later, take care
So sorry you’re feeling this bad, will keep praying, & sending you a hug 
