I’m just recovering from surgery this week, so have a bit of time to sign up and share my own experience.
Like many others it has taken me a long time to get to here - I started having symptoms on my left side only, almost 6 years ago. Initially I thought I had an ear infection, but my GP couldn’t see anything wrong. It would go away but kept coming back. I was aware from having had my tonsils out a few years previously, that it could be some kind of referred pain. So I saw my dentist, and got a referral to a Max Fac to check if it was a TMJ problem. This rather set a pattern for the next few years - the Max Fac didn’t see much evidence for a TMJ problem but couldn’t rule it out. I’d then try another line of inquiry, not get very far, and try a different Max Fac. It was difficult because I’d typically get 3-4 weeks remission, then the symptoms would start up again and get worse over a number of weeks, before fading away again. So often I’d book to see someone when I was in a lot of pain, only to have no symptoms at all by the time I saw them. I was experiencing a lot of left-sided headache pain as well as jaw pain, and pain at the bottom left of my skull. I also had tinnitus in my left ear which seemed to get a lot worse immediately before a new bout of pain symptoms. Later I also started having problems with my neck and shoulder, which may or may not be related. At its worse during a painful episode I had to be on painkillers 24/7. The worse thing was being woken up in severe pain, having to take more painkillers and then wait 30 mins or so for them to take effect - I was losing a lot of sleep!
Over the years I tried:
Max Fac x 3
ENT x 2
NHS Dentist - soft mouth guard
Private Dentist - hard plastic mouth guard
Physio x 3
Self Hyponosis (to avoid night-time jaw clenching)
For most of this time the only possible diagnosis seemed to be a TMJ disorder, but on the other hand I didn’t seem to be responding much to the common approaches for treating TMJD. My second Max Fac performed a proper MRI scan (initially I’d only had an x-ray on the NHS). This confirmed I really did have a TMJ issue, but seemingly only a very mild one.
As time went on I was continuing to have the same problems, and I starting noticing the pain was often lower down than my TMJ; also I was getting really severe pain in my throat and even my tongue.
Ultimately I saw a third Max Fac who performed an arthroscopy and joint wash-out. It didn’t help my symptoms, and he said TMJ issue couldn’t possibly account for all the symptoms or their severity.
This was rather disappointing as I felt I was back at square one - but at least I knew I had to look for something else, and I couldn’t believe I had something that was new to medical science.
What cracked it in the end was looking at possible causes for my severe throat pains - there are more limit possible causes for this. When I came across Eagle Syndrome it sounded possible - often mistaken for TMJ disorders; linked to having had tonsils out, which I’d done a few years before it all started; not common or well known about - which would explain why no-one had spotted it sooner. It has even been linked to heart palpitations due to irritation of the vegus nerve - guess what, I’d had that too. I’d been successfully treated for that issue with a cardiac ablation op some years before, but might it explain why I had it in the first place?
After some googling I identified Mr Jonathan Hughes in my area as an ENT consultant with awareness of Eagle Syndrome - he’s written an online article on the subject. So I was able to get a referral to him. We first ruled out if there was anything wrong in my spine which might be causing the problems, as some minor spine issues had shown up on an earlier scan for the torn rotator cuff shoulder issues I’d also been having. Having done that, I had the appropriate CT scan to check out my styloids. Actually, the styloid processes themselves weren’t too long - which fitted, as I’ve never had issues with feeling like something’s stuck in my throat, or pain on swallowing. However it did show that the stylohyoid ligament on my left was indeed highly calcified. Fortunately Mr Hughes agree that given my long history and that I’d already tried pretty much everything else, on balance it would be worth operating to take it out.
So I had the op a few days ago, and am now recovering at home. Don’t feel too bad at all so far - some numbness around my cheek and ear which he’d warned me would happen, and my swallowing has been a bit weaker than previously, sometimes a bit painful. But I expect it will all settle down over time. Incision not really painful at all yet - I wonder if that’s because the area is numb generally?!
What remains to be seen is whether it actually resolves some or all of my symptoms. Mr Hughes noticed that the calcified ligament did appear to be pressing on my nerves. So I’d be very surprised if it doesn’t resolve my throat/tongue pains at least. I was often getting the throat pain accompanied by severe headache some way above my left ear, so I suspect this was the vascular side of eagles and will also be solved. As for my jaw, I think I really do have some element of TMJD, and it sometimes flares up if I’d had a particularly chewy meal, or woken to find my jaw clamped on my mouthguard. I wonder though if this was in some way a secondary problem caused by ES - time will tell. Similarly, I kept getting a flare up of a torn rotator cuff shoulder issue. I think I’ve seen shoulder pain mentioned on here, so it will be interesting to see if that’s related too. My tinnitus I originally had from some years before the ES / TMJ problems started, but I’m hoping it may settle back down again, as the ES episodes made it worse. Finally my heart rate - although my cardiac ablation op was successful, I’d started having the odd flare up every now again over the past couple of years. It will be interesting to see if the op has any bearing on that.
Thanks for reading my rather lengthy story - I’ll try and provide an update in a few months to record how it all goes. I found this site very helpful when first thinking about Eagle Syndrome to try and work out if it could be what I had - hopefully someone else may find my experience similarly helpful too.