So I've been told not eagle syndrome yet because styloid ligament isn't calcified fully but..... I'm so lost :(

General
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Ok so I went to a specialist who has dealt with eagle syndrome a few times and he told me that as of yet I do not have Eagles as the styloid ligament isn’t fully calcified however it is calcifying as seen on ct scan. Can someone explain to me why isn’t it still Eagles even when it’s seen to be turning to bone even though not fully hard? I’m so lost and confused right now as I still have the same symptoms as Eagles I have the sharp pain in my neck when turned to the left ( the side calcifying) I have tinnitus, I have a sharp pain in left ear that turns to an ache, I have constant sore throat and neck when touched ( hurts to turn head while driving sleeping ect) though I have a new problem that I need help with; I have the spasm like episodes lately in the left side of my face particularly my eye eye lid and area seem to feel as if it’s going paralysed heavy feeling major discomfort in side of face, has anyone had anything like this or have any idea what the hell is going wrong with me? I live in constant pain and it seems as if I’m not getting any answers I’m sorry for venting I’m just stuck in 23 with a 1 year old and 2 year old, and my partner has a broken neck so life isn’t easy to say at the least. I’d be very much grateful to anyone that can help me

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Stac, I've been though hell over the last year. A lot of my symptoms are similar to yours - I had MVD surgery 4 months ago that appears to have failed. I may have had Eagles or a variety of Eagles all along. To put it in perspective from my vantage point,I have severe tinnitus - from the MVD surgery - and it is the least of my concerns.

Since it is such a rare disorder - and going to and/or relying on the wrong doctor(s) can cost you major chunks of your life - trust me - I suggest you look for other Eagles specialists and get at least one other opinion from a bona fide specialist.

All the best,

Eddie

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Yes, I definitely agree, that a second opinion would be a good idea. Because it is so rare (or is it?!! Maybe just under-diagnosed!!), there is a lot of ignorance about ES. A simple google search like I just did will show:

  • Eagle syndrome is characterized by recurrent pain in the oropharynx and face due to an elongated styloid process or calcified stylohyoid ligament. The styloid process is a slender outgrowth at the base of the temporal bone, immediately posterior to the mastoid apex.20 Jan 2015

  • Eagle Syndrome: Background, History of the Procedure ...

    emedicine.medscape.com/article/1447247-overview
    As this definition shows, it can either be due to elongated styloids, or to the calcified stylo-hyoid
    ligament which you have. Feel free to vent on here, as we do understand, and sorry that you're
    having such a hard time with little ones and a husband to look after. If you have a look on the
    doctors list on the top menu bar, it might be an idea to see if there's anyone else you can see
    who is more familiar with ES, although you said this doctor was!!
    Otherwise you could print off as much research you can find to support your case and take that
    with you! Could you try emailing that question to him? It's not easy always to challenge doctors
    in person.
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P.S.- if it's any consolation when I was first diagnosed, and the consultant agreed, then on my next review appt. with the

same doctor he decided I didn't have ES!! He didn't disagree with the elongated styloids as he could see them on x-ray

and feel them, but I think didn't actually agree that they were causing my symptoms! You've just got to try to keep going and searching for the right doctor.

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To make things worse I’ve also been diagnosed with osterosclerosis in right side which requires Surgery for a stapdectoctomy which is replacing my stapes bone inside the middle ear with a pros ethic and also with 2 cervical ribs on my c7 one left and one right, I’ve just been for another CT scan to get a better look at what’s going on inside my neck :frowning: I just can’t seem to win at anything right now

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Sorry, Stac01, that all sounds like a lot to cope with, and you must be in a lot of pain. Your symptoms sound like a lot have with ES, but other things going on will have an impact too. Multiple problems can be overwhelming, can you wait for the next CT result, and then at your follow up appt. try to get some clarity about the calcified ligament. Print out some of the research papers with symptoms on them, so you can show you are informed, and raise that you have these symptoms. Then you'll have to try to get some guidance from the doctors as to what the priority is for you, which surgery comes first. And have a look through past discussions for ideas for pain relief too, perhaps your primary care doctor could prescribe something for you. A couple of members have had treatment for Bell's palsy too, were a nerve in the side of the face is affected, and had steroid treatment for that- it might be worth getting that checked out as you're feeling like the side of your face feels paralysed?

Let us know how you're getting on- sending you a big hug.

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Well, it sure sounds like the symptoms that a lot of Eagles patients have. I think your doctor may have seen a couple Eagles patients, but he doesn't know all about it. i don't think any doctor really knows all about eagles. it's such a confusing syndrome because of all the different factors involved so I can understand why doctors don't understand it. We all present differently. I agree that it sounds like it would be in your best interest to find someone with more Eagles knowledge or at least someone who is more willing to listen and learn and try to help.

I've been to 50 something doctors in my 4 year Eagles quest and some with more knowledge have helped me and some who didn't have that much knowledge but were willing to listen, learn and try also helped me.

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I’ve just found out that I have reversal of cervical lordosis in my neck lack of curve it’s actually reversed
113-image.jpg (1.25 MB)

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Along with everything else

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Have to be honest, I've never heard of that. Is there anything they can do? It might have an impact on treatment etc., and will presumably affect the whole soft tissue structure of your neck, as everything will be out of alignment. Eddieh has found some research into a link with the distance of the C1 processes in relation to the styloid- that might be interesting given this latest scan pic/ diagnosis. Do you have much support from family?