I joined this forum a few years ago and was told by my oral surgeon I didn't have Eagle's. I have all the symptoms of it however.
Since then I've had an (unsuccessful) MVD for glossopharyngeal neuralgia and am back to square one.
A little while ago I came across this article on Eagle's Syndrome caused by the C1 being too close to the styloid process which looks like it could be my problem as my C1 is rotated towards my right side and the wing of it is very, very close to the styloid process.
Does anyone know if there is any specialist in the UK that would be prepared to consider this as a diagnosis?
There have been discussions from others in a similar position with styloids not particularly long, but having problems. The nerves and blood vessels exit the skull quite close to the styloid process, so the angle of it can be just as important as the length- in my unqualified opinion! You can see the angle of the C1 quite clearly in your pic, it is very tilted isn't it!
Some of the members have kindly done a list of doctors who've done surgeries, so you could look for UK doctors on there- but there's not many! I've just had surgery with Mr Axon at Addenbrooks. I have constant aching in the GP and T nerve areas, but I got the impression that Mr Axon didn't think that would have been caused by the styloids. He did the surgery because my styloids were both pressing on the jugular veins too, so I had some intracranial hypertension symptoms too. At the moment there's no improvement with the nerve pain following the operation, but the vascular symptoms are definitely better. So I don't know if Mr Axon would help you, but he's certainly done lots of surgeries.
Meant to say sorry that having gone through MVD you've still not been helped. Have you tried medication as well?
Thanks so much for the reply. I do think my jugular vein is being compressed as well as I have symptoms matching that so it's interesting you've mentioned that.
I'm glad you can see the tilt on my C1, sometimes when you mention it to doctors they look at you like you're bonkers!
Yes I've tried a few different medications but I must admit I am awful with tablets and always get all the side effects so I avoid them now. The only thing I take that seems to help me is aspirin, which I started sort of by accident as something to help with my migraines. My symptoms are much worse without it so I am wondering if this is a vascular element to it all.