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Eagle Syndrome - Online Support Group

Could this be eagles?

Hi,
I have to admit I have been on this forum a number of times in the last year or so, quietly monitoring your discussions in hope of finding something that fits with my story. I have had some kind of pain condition for the last year which is becoming a real bloody pain. I first went to the doctor early this year regarding a lump below my front teeth and constant ear and jaw pain. My main concern was that this lump represented something sinister causing these other painful symptoms. The doctors first reaction was to send me to an ENT who checked the lump in my mouth and placed a camera down my throat through the nose. His initial investigations were fruitless, he thought the lump insignificant and the camera showed nothing untoward. However, he decided to order an MRI of the face and neck to rule out anything nasty. The results of this were also clear except some right side cervical reactive lymph nodes. After this I decided I needed to take a step back and take stock, figuring that if I worried less about my symptoms they would eventually fade away. No such luck. The ear pain is my chief complaint and this continued (I have to lye on the right side in bed for relief) as did my jaw pain. I went back to a dentist who referred me to an Oral Surgeon, he examined my mouth and neck and again said there was no remarkable findings other than slight lymph node enlargement in right neck and suggested my pain was neuropathic. I mentioned perhaps I had eagles syndrome to this gent but he assured me eagles only really happens bilaterally!!! Bear with me… so I went to a different dentist a short time after this who referred me again to an oral surgeon in hope of some resolution to the pain, this referral was processed in June and I have still not received a letter from the NHS! If only they were funded better. I felt a bit at a loss and still do, I sat on the issue for most of the summer (bar a few visits to the GP for pain meds and one set of antibiotics for suspected ear infection) thinking that I could not do much but wait for my next appointment. However, after the summer break and commencement of uni the pain was really getting in the way so two weeks ago I booked an appointment with a leading head and neck cancer specialist for a £200 fifteen minute consultation in hope of finally getting a concrete POA to treat my pain. He examined my mouth briefly and was quite dismissive of my fears of serious illness and referred me for an ultrasound. This is where the story reaches the present. I had this scan today, the radiologist told me there is nothing at all of any concern in the mouth or neck. He admitted again lymph nodes are swollen but not to a great or worrying extent. My question I guess is what now? Does this sound like eagles? If so what steps can I take to get a diagnosis? My symptoms are right ear pain, pain behind right ear, swollen nodes on right side, pain in right side of tongue, feeling of something sharp catching underneath the tongue in the throat on the right side just below the tonsil, jaw pain and tightness, shoulder, collarbone and armpit pain…as well as a few more. However I don’t have a ‘constant sore throat’ as many sufferers seem to have or any great difficulty turning my head to a particular side, could it still be eagles? I also had a nasty facial injury in Sept 2017 on the right side of my face where I get problems, I broke my nose and bit through my lower lip, I was very swollen and bruised but never received any scans, perhaps this could have triggered it?? Please get back to me, share your wisdom. I hope you’re all coping as best you can and thanks to anyone with the resolve to have read this whole thing! T X

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Hi! Glad that you’re ready to post on the site after reading for a bit!
It does sound like it could be ES; in the Newbies Guide section there’s a thread ‘ES Info- Common symptoms & what might cause them’, you could read that if you haven’t already. The best way to get an ES diagnosis is with a CT, but I don’t think you can request one of those except through a consultant. The oral surgeon you’re being referrred to could order that. It’s so frustrating that your ES concerns were dismissed because they symptoms aren’t bilateral! We hear stupid reasons all the time with doctors announcing it can’t be ES because you don’t have this or that symptom…others have been told the opposite to you that it can’t be ES because ES is only one side! So you’re not alone! I’d try getting your GP to push the oral surgeon appt., to get in sooner, as you should have heard from them by now. or otherwise consider seeing a different consultant privately if you can afford that; a skull base surgeon is a good bet. Mr Axon at Addenbrooks is the most experienced doctor that we know of, he does private work at Spire. Then if you take the info from here- print out a research paper or two that mention ES symptoms like you have with you (unless you see Mr Axon) But you need a CT scan to diagnose ES, to look at the styloid processes from skull base to hyoid. We have a list of doctors familiar with ES in the Doctors Info section, there is a Mr Michael Saunders an ENT / Otolaryngologist at Bristol Royal Infirmary you could ask to be referred to or see privately?
Otherwise if the oral surgeon has a panoramic xray that can show the styloids too- I don’t know if your dentist might have one, probably just the hospital clinics I would think. I was lucky to be diagnosed that route- I had tooth, jaw & ear pain, but also had a salivary gland stone so was referred for that, had different tests done & a panoramic xray showed the styloids.
Also it sounds like you have nerve pain- there are medications which can help like Amitriptyline, Gabapentin or carbamazapine , your GP could prescribe these so that’s worth a try. They can take a little while to work, so you’d have to be patient.
Hope that you can get some help soon!

I second Jules about pano xray: the way I discovered the root of all the evils in myself was by looking at my dental panoramic x-ray, that I asked my dentist to email me. It was about 5 years after the neck/shoulder pain, tinnitus, “pressure in head”, harsh voice and dozen of other symptoms started, and doctors couldn’t find anything.

And I’d say it’s a pretty cheap and simple way to get that very initial self-diagnosis: if there is significant elongation, it likely will come up in panoramic xray, unless visibility is blocked by other bones. For example: https://st2.depositphotos.com/1151116/9685/i/950/depositphotos_96854754-stock-photo-dental-panoramic-radiography.jpg you can see that styloids are quit short, and on the right side in the picture it’s more visible than on the left. But here https://www.semanticscholar.org/paper/Prevalence-of-Styloid-Process-Elongation-on-in-the-Gokce-Sisman/edfc839bc3498b3343fe0a4c900cbb30ef948772/figure/0 they are more than clearly elongated.

Saying that, xray not always properly shows elongations. So if the elongation/calcification is not present on a dental xray, it still may exist. But if the elongation is clearly visible on Xray, then it likely does exist.

Disclaimer: I am not a doctor, so my opinion or advice should not be taken as a specialist’s opinion or advice.

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I’m in hardy agreement with all that Jules & vdm have posted.