Xrays and How difficult is it to get a surgeon in the UK to operate on Eagle's Syndrome

General
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Hi

I am a new member and am really impressed with the comments I have read so far ... and there are so many. When I was told this condition was rare and even more rare with symptoms it does leave you feeling rather isolated.

I wonder if anyone can tell me if x-rays are accurate in pinpointing a calcified ligament or extended bone. Today I had an x-ray and the radiographer said he couldn't find anything but would report back to my GP. Over the last six - seven years I have had several appointments with a Consultant at ENT who twice put a camera down my throat, checked my ears and couldn't find anything. I have had an MRI scan and nothing showed up. But at my last visit a Consultant said that she had come across what I have described as symptoms - something in the throat, soreness in throat and ear including headaches. She had treated dancers in India and apparently this is common in those dancers who move their heads from side to side, obviously causing damage over the years. She pressed inside my mouth and under the tongue and it was painful and that's when I first heard of Eagle's Syndrome.

I would really like a positive diagnosis because I am beginning to feel as though I am not believed.

I have also been diagnosed with a thyroid condition and was asked if I had had any trauma to that side of my neck and I can't think of any trauma to that area.

I would also be interested in exploring surgery. Can anyone tell me if there is a problem in the U.K. finding surgeons who can do this type of operation. I get the impression this is a big setback. I do not want to stay on painkillers indefinitely. As it happens I was told to take Ibuprofen but they don't work nor does codeine. I understand that this type of operation is not without its risks. I will ask my Consultant when I see her again but would be interested if anyone here has had the operation in this country and where did they get it done and by whom.

Really would love to hear from you.

Pepper

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Pepper,

Firstly if you look at top of home page you can click on 'Discussions', and have a look through those for 'Waiting For UK Referral', posted by delusive before Christmas- others posted with a few names of UK consultants they'd recommend. I'm waiting for a referral to Addenbrooks. Emma has also made up a spreadsheet of recommended consultants in previous discussions, but I don't think some of the UK consultants were on that as they've only been recommended recently.

An x-ray won't show elongated styloids, nor will an MRI- either a panoramic x-ray, or better still a CAT scan would show them, or any calcified ligaments. Quite a few people on here seem to have had nodules on their thyroid- that would be an interesting discussion to see what link there is!

I was prescribed codeine and it made no difference to me, but I've now been prescribed amitryptiline which helps nerve pain, and that has helped a lot. But, like you say, it's not something I would want to be on long term! I get pain along the glossopharangeal nerve, and the trigmenial nerve, so I presume the styloid is pressing on them. It's also helped the earaches I was getting, and the toothache.

If you're thinking about surgery, then going to someone who has operated before seems to be the best advice, so it might pay you to ask for a referral to someone else if you can get ES confirmed. Hope that helps a bit!

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Thanks for the information - very helpful. I will see my GP in a week's time for the x-ray results and I will ask him about pain relief. No joke when nerves are involved.