Hi & welcome to the site!
I’m pretty sure in the UK even paying privately, you would still have to be referred for a CT by a consultant, so that would mean paying for a private consult as well, I don’t know if that is something you could do? It’s such a shame that the ENT you saw didn’t refer you for one!
If you can go the private route, it’s still worth seeing someone who is familiar with ES, as it would be really rotten to pay privately & to see someone who was ignorant about it, so have a look at the doctors list, here’s a link:
Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
Mr Hughes in London does private work with Circle group, so would be the best bet closest to you, otherwise if you can’t see him it’s worth ringing anyone more local to see if they would see ES patients before you visit!
Without a CT you can’t really say if it’s ES or not; the symptoms you describe are all ones that members have had. Sometimes Hyoid Bone Syndrome (where the processes of the hyoid bone are elongated) can cause the strangled symptom & clicking, or if the stylo-hyoid ligaments are calcified from the hyoid bone upwards. So that’s worth looking in to as well, to make sure if you get a CT it does show down to the hyoid.
If you want to go the NHS route, I think Mr Hughes does NHS work, Mr Axon is very experienced but hasn’t been able to do surgeries for members recently (cases are discussed by a team & the criteria for accepting patients for ES surgery seems to have changed), he has a really long waiting list too.
Some members have been able to feel their styloids poking at the back of the throat, around where your tonsils are- if you can feel something bony there, pushing on them gently can cause symptoms. That might give you an idea if the styloids are the issue before you pay out? It’s not a diagnosis but just for an idea…
I hope this helps!
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