I’m from Scotland (probably the place where there are the least experts in the ES field), but I was wondering the best way for diagnosis of suspected ES?
I have had strange symptoms for years that I couldn’t get to the bottom of, but recently my jaw started clicking and I had an MRI of my TM Joints and have been told I have displaced discs with reduction and some condylar erosion. This has devastated me, but I also have a suspicion that I may have ES also. I quite often get a feeling of something sticking in my throat, some facial nerve pain, and a bone crunching noise near my ear/neck. I also have unrelenting neck pain.
I am due to see NHS maxillofacial next week, and although I know a lot of my symptoms can be due to jaw joint issues, I’d like to speak to them about ES to get that ruled out. Are maxillofacial surgeons the right people who could diagnose this or am I likely to get dismissed?
A maxfac doctor could diagnose you if they know about ES- I’m in England & it was a maxfac doctor who diagnosed me from a panoramic x-ray.
Personally, I would look at the research papers & print off one or two which mention your symptoms , & take those with you to show them, many doctors are very ignorant of ES, but you might be lucky! My diagnosis was by chance! They could do a panoramic x-ray there which can often see the styloids, but a CT is the best way to see them, so otherwise see if they’ll refer you for that?
It’s also an idea otherwise to make a note of the only doctor on the list in Scotland & see if you can get a referral to him? The local doctor I saw was very happy to get rid of me & to refer me to Mr Axon in Cambridge!
Good luck & let us know how you get on!
Thanks Jules, I’ll see what the Maxillofacial Surgeon says when I raise it. Good advice about printing off some data to present to him.
I never know who deals with what in the health world these days and I get paranoid as I’ve had a lot of dismissals over the years with my symptoms. When I was last at maxillofacial they did an OPG scan of my Temporomandibular Joints, but I wasn’t sure if that would also show the Styloids. I’ll ask him, and if they don’t entertain me, I’ll see if I can get a referral to the consultant on the list.
@Mazzy31 - Welcome to our forum! It’s unlikely that the scan of your TMJ area will show your styloids because those are pretty far forward of the styloids which proceed from your skull base. Just my thoughts. I hope your Maxillofacial surgeon is willing to do a CBCT/pano x-ray or refer you for a CT scan.
I was diagnosed by Dr Ajay Wilson, max fac surgeon from Sunderland Royal Infirmary. I had surgery at SRI.
I was v lucky that he was covering absence at my local NHS hospital.
From my history he was pretty sure that he knew my diagnosis. Facial x-ray and CT scan confirmed his suspicion.
I presented primarily with a lump in my neck and feeling dizzy when I had my head in certain positions. Post surgery I became aware that I had had reduced neck mobility and generally felt dull. V odd, I know, but post surgery I felt more mentally agile. I had carotid impingement.
The admin at my local hospital, knew me as ‘the styloidectomy’ , I was her second in 15yrs!
Dr Wilson was excellent, I felt v confident in his care.
He also offered to monitor my other styloid incase it also grew further. I was v impressed with his offer, I am due to go in Jan 2026.
I’m really glad that you were able to have your surgery @NxJane ! We have so few doctors in the UK on our last, it would be good to add another one, so thanks for the info…is he also at Newcastle, I looked him up online & found this doctor, is he the one who did your surgery? Mr Ajay Wilson - Oral & Maxillofacial Surgeon
Thanks…
Hello @Mazzy31 I am in the UK and am now under Mr Axon in Addenbrookes. I had been experiencing symptoms for around 15 months with no explanation. It wasn’t until my NHS dentist ordered an OPG that my elongated styloid was discovered, and only by members on this forum. I also had a CT with contrast that clearly showed the styloid at 3.5cm, but also that my ECA is wrapped over the end of it. I did at first have a private appointment with Mr Axon for a diagnosis £500 for 35 minutes, as it was an 18 month wait under NHS. I am now waiting for operation around 15 months under NHS. I believe Mr Axon has done around 300 styloidectomies over his career.
Its a long road, but hopefully your OPG should show something and then you can request a CT hopefully with contrast as this will show up any vascular involvement. Wishing you all the best.
Thank you for responding. I checked your profile, looks like you had quite a runaround trying to get a diagnosis of what was causing your issues I so wish there were health professionals that would look at the big picture holistically and try to help people get a diagnosis quicker. It feels that once a certain discipline has done their bit then they just send you away. None the wiser, exhausted and still with their debilitating symptoms.
I’ve been struggling for quite a few years now to try and understand what’s going on with me, and I don’t even know if eagles is a rabbit hole that I’m going down in desperation I’ve had many symptoms and then a few months ago my jaw started to click. I then had a private MRI which showed TMJ disc displacement and condyle erosion. However, I’ve no idea what has caused this. A lot of symptoms seem to co-exist between TMJD and Eagles, but I also can’t logically assume ALL are to do with my jaw joints, although it does wreak havoc on so many areas. I do have a sensation of something sticking into my throat, ear problems, random facial and mouth tingling and nerve pain, neck ache, headaches, numbness in arms and hands and a really dry mouth all the time. I also have areas under my ear and underneath my jawline that look and feel swollen to me. I’ve been dismissed so much by my GP’s and they’ve started to mention health anxiety! Bloody right, but it’s because of my symptoms that I have this anxiety, not that they don’t exist and it’s all in my mind!
I see maxillofacial this week, but I’m still on this neverending quest to find out my true cause
It sounds like Dr Axon would be the person to see specifically to rule eagles in/out, although I see there’s another consultant based in Scotland. I live in Aberdeen, so everywhere is a journey as I don’t believe there is any specialists here. £500 is a lot for a consultation, but if it gives you the answers and the surgery improves quality of life for you, then so worth it. I do hope your surgery provides the relief, you’ve definitely been on a long journey, and it shouldn’t be like this.
Sorry, I’m having a bit of a Sunday morning rant lol. But I read so many stories of people not getting the care and investigations they desperately need and just feeling helpless. The fact that people feel so unwell, makes it really difficult to muster up the energy to push for answers, and pretty much Co-ordinate their own care. It makes me feel so sad and despondent
Hi @Mazzy31 thank you for your reply. Your symptoms certainly sound like ES and a lot similar to mine. If you can manage to get an OPG & CT with contrast you could upload to the forum as we have members that are really good at spotting things that unfortunately are missed by the medical profession mainly because ES is a rare condition that they may not have seen. I didn’t see Mr Axon until I was almost certain that ES was my problem and managed to get my scans etc done under NHS prior to my private appointment him. Keep us posted with your progress.
If you don’t mind me asking, who organised your CT scan? Was that your GP or one of the NHS hospital departments? I’m going to try and get maxillofacial to order one for me, but I’m not holding out much hope as I’m purely due to see them for my TMJ issues I fear they may dismiss my concerns and request.
I think in England it seems to be that only a consultant can order a CT for you, a GP can’t, but it might be different in Scotland! If he won’t, don’t despair but try & get the panoramic x-ray done as it may still show the styloids…they can sometimes be felt too, in the tonsil area, so he might be able to feel them if they’re elongated?
The whole health anxiety thing is beyond frustrating, like you say, of course people are anxious when they have symptoms/ pain that doctors can’t help with! And then once you get that label it’s even harder to get treated anywhere. Sending you a hug
Thanks Julie, yes, I said to my doctor that I wasn’t an anxious person at all before all these symptoms started, but due to the number of visits/calls I’ve made to them, I’m definitely in that box now and I feel my file has a red flag assigned to it.
I doubt my GP would be able to request a CT scan either, so it’ll probably need to be someone from max fax or ENT that I’d need to convince
Hi @Mazzy31 yes @Jules is correct only the consultants can order a CT in England. My GP tried but the request was rejected. I would certainly start with an OPG, mine was requested by my dentist but done within the maxillofacial department, that should give you some idea whether a CT would be beneficial. I was also under Neurology who requested the CT with contrast to check my blood vessels due to my headaches. This came back satisfactory but the elongated styloid was missed, but through a request to the hospital, I then had access to everything I needed. Fingers crossed you will be able to get NHS to order the scans for you.
Thank you, that’s really helpful
I so wish there were health professionals that would look at the big picture holistically and try to help people get a diagnosis quicker. It feels that once a certain discipline has done their bit then they just send you away. None the wiser, exhausted and still with their debilitating symptoms.
I’ve had many symptoms and then a few months ago my jaw started to click. I then had a private MRI which showed TMJ disc displacement and condyle erosion. However, I’ve no idea what has caused this. A lot of symptoms seem to co-exist between TMJD and Eagles, but I also can’t logically assume ALL are to do with my jaw joints, although it does wreak havoc on so many areas. I do have a sensation of something sticking into my throat, ear problems, random facial and mouth tingling and nerve pain, neck ache, headaches, numbness in arms and hands and a really dry mouth all the time. I also have areas under my ear and underneath my jawline that look and feel swollen to me. I’ve been dismissed so much by my GP’s and they’ve started to mention health anxiety! Bloody right, but it’s because of my symptoms that I have this anxiety, not that they don’t exist and it’s all in my mind! 
