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Eagle Syndrome - Online Support Group

Recovering from op for calcified stylohyoid ligament


#1

Hi all,
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
Neurologist
ENT x 2
Orthopaedic consultant
Spinal Surgeon
NHS Dentist - soft mouth guard
Private Dentist - hard plastic mouth guard
Osteopath
Acupuncture
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.

regards, Roger


Trying to get diagnosed. Advice please!
#2

Welcome! It sounds like we both might be recovering together “across the pond”. Your experience was extremely familiar to me. Did all that too! The acupuncture guy said to try to ignore it. SO glad I did the surgery. My recovery has had an unfortunate element of tongue swelling on the operated side but it’s improving (marginally) daily. Let’s both be patient patients :grin:


#3

Roger, thank you for sharing your story; it’s really helpful for others & gives hope! It’s also great to hear of another UK doctor as they’re few & far between…I’ll have to look up his article.
Hope that your recovery goes smoothly!


Trying to get diagnosed. Advice please!
#4

Hi all,

thanks for the kind welcome comments Jules and SewMomma.
A week on from my op, and I seem to be quite fortunate so far.
The main thing I noticed initially post-op was that my swallowing was quite weak and somewhat painful. So I was very glad to have read the advice on this site before the op and stocked up on soft foods! My throat often felt dry and quite sore - I guess to some extent this may have been from having a ventilator tube in it during the op. Anyway over the past week this has noticeably improved and I’m eating well, though still avoiding anything really chewy or crunchy.
I’ve got numbness in my cheek and jaw above the incision line. I’ve had surprisingly little pain from the incision itself, and I wonder if this is due to the numbness. So I may yet have a harder time of it as sensation returns. For now though the lack of pain has been great, and I’ve needed very little by way of post-op pain killers.
My consultant noticed some minor weakness on the left of my mouth post-op. The only time I’ve really noticed it myself has been whilst trying to eat toast - I keep nearly biting my lip! I expect this resolve itself over time also.
I’ve taken my dressings off - as I guy I find they don’t stay on too well due to beard growth! A surprising challenge has been trying to remove all the adhesive glue that the dressings left behind.
I should be able to get out of the house a bit from tomorrow - I’ll have to keep my neck covered up as it’s still looking a bit gruesome. Bruising has now starting coming through, and it’s a bit swollen still. I’m generally feeling a bit achy and lethargic; I expect this is due to be stuck indoors for a week!
So overall I think I’ve got off lightly so far - it will be interesting to see where I’m at in another week.

Roger


#5

Really glad that things seem to be going well for you! Post-op experience does seem to vary quite alot- as I commented on one of the other threads, mine varied quite a bit between the 1st & 2nd ops, although like you I think I got off pretty lightly! At least you can sprwad the word about ES if anyone notices your neck!
And thank you for sharing your experience; it’s so helpful to others thinking about surgery & going through it as well.
Take it easy still! :slight_smile:


#6

Sore throat here in week one too! Bad! So much so I may request liquid pain meds if I have side two done. I had to hold on to something when I swallowed the pills those first few days. I think it was possibly the breathing tube too. I got brave and ate a potato chip today! Someone brought some fun things for the kids and I wanted in on the fun, lol! I kept it on the left side and got it down! I haven’t left the house yet either. My husband has taken the kids out. I just don’t want to shed my robe yet :wink:


#7

Great report, RogerinLondon! So happy to hear of your post op progress & your good surgical news.

Olive oil, coconut oil vitamin E oil will all help remove the bandage adhesive & will be good for moisturizing your incision. You should be able to use any of those at this point w/o detriment to the surgical site.

Sore throat post op is often from the breathing tube in external ES op cases. As Jules noted, in bilateral cases the 2 surgeries can have totally different post op pain situations. As in her case, my second surgery was a “skate in the park” compared to my first one. Throat wasn’t even sore post op. It was unexpected but quite a relief!