New to the forum but just wanted to say hello and share my experience so far and get some thoughts on whether my symptoms would be consistent with others. Have to say what a super informative and supportive place this is.
First a bit of background, I am 39 year old male based in the UK and had lymphoma back in 2010/11 with chemotherapy and radiotherapy to my right side of neck and face.
I made a full recovery but have had some lingering after effects of the radiotherapy including necrosis of my right parotid gland (which used to swell regularly), right eustachian pain (sharp) and general fibrosis and hypertrophy of my right side lymphatic system (and masseter muscle!). Coincidently my left styloid has been fully intraorally palpable (back to the bone) since my tonsillectomy as part of my treatment in 2010/11 but fully asymptomatic.
About 5 weeks ago I started getting a stabbing pain in my throat on the right side directly in the tonsillar fossa. When pushing the back of my jaw (under ear behind jaw bone) I can feel the sensation of my styloid moving forward inside my mouth under the skin. This had continued and gotten progressively worse over the last 5 weeks to include burning throat pain, referred stabbing ear pain (particularly underneath the earhole buy the ear cartilage), slightly dull (almost unnoticeable) headaches in the right side plus sharp stabbing on the outside of my neck near my thyroid and tingling in my mouth.
I went for an urgent referral ENT today who’s (correct!) focus is on ruling out malignancy and/or recurrence due to my history. Good news is he looked down my throat and can’t see anything - all looked normal. He’s now sending me for an MRI as needs to see my soft tissues (and I’m aware CT is better for Styloid).
So a few questions to this wonderful group assuming I get the all clear on the very bad stuff and considering this may be ES:
do my symptoms align with the common ones of this group?
Is it likely my right styloid will have become a problem 10 years after my left came through and my radiation therapy?
If I press the back of my jaw / under ear and can physically feel something protrude in my tonsil region but it isn’t painful - is that normal?
I have right shoulder tension, occasional aches as well as shooting pains in my right arm occasionally - could this be linked?
I know I shouldn’t do this but when I dig around in the tonsillar fossa I can feel two distinct things below - one a huge gland (I assume my submandibular) and second below that and down my throat a piece of what I assume to be hard cartilage going across from the outside of my throat to the base of my epiglottis - neither of which can be palpated on the left side. Can an elongated styloid move structures around and / or inflame salivary or lymph glands?
Thank you all in advance for any insight to my many questions. I will keep you posted on my progress and whether this leads to an ES diagnosis.
Hi & welcome!
Yes, your symptoms could all be ES related…the info in the Newbies Guide covers common symptoms, so I think you’ll find yours in there! Even the shoulder & arm pain can be caused if the styloids are compressing the accessory nerve which is close to them. Depending on the angle of the styloid they can often be felt under the jaw or inside the mouth close to the tonsils, best not to keep pushing on them though as it could well aggravate symptoms or even snap the styloid…Quite a few of us have had inflamed salivary glands with ES, & swollen lymph nodes in the area are common too- presumably from general inflammation caused by styloids.
The styloids can start to be a pain suddenly - yawning, laughing, trauma can sometimes fracture a SP, or alter structures in the neck so as to brin it in contact with nerves &/or blood vessels. Otherwise there can be a gradual worsening of symptoms as the inflammation increases or connective tissue gets slacker as we age & that alters the position of the structures in the neck.
Hoping that nothing sinister comes back from your MRI, & if so, you can get a CT to check the styloids.
Best wishes!
Hi. Sorry to hea r about your discomfort I also have es and have alot of pain in both ears also ringing in ear .face pain mainly on left side.neck pain and movememt of neck.Im alfo very fatigue My first appt was with and ent which didnt really know about eagles .so now Im seeing a head and neck sending me for more imaging hopefully surgery so I can see how i feel after that. Take one day and a time. Rest when needed . God bless
Welcome to our forum! So glad you found us & have shared your ES experience so far. I’m sorry you’ve had to deal w/ cancer at a younger age & hope that it stays in remission going forward.
As Jules commented, your symptoms are definitely those we see w/ ES. I could feel my left styloid under my jaw & as you’ve noted w/ your right one, I could feel my right one when I pushed on the soft tissue just behind my right earlobe. Usually poking them externally would cause my symptoms to flare thus, prior to my ES diagnosis, I knew there was a connection between the hard lumps I felt & the pain I was having.
ES symptoms can come on quite suddenly as they have for you. We’re not always sure why that happens, but it does which can be alarming & scary. I’m glad you already knew you had styloid elongation on one side as that increases the likelihood that you also have it on the right which provides an answer for the cause of the pain you’re having.
Thank you all for the comments and guidance. It’s really appreciated.
Just a quick update following the MRI, good news is they have ruled out and malignancy or tumours. Bad news, they have no idea what is causing the symptoms (sound familiar? ).
The report noted lots of fibrosis and damage as a result of radiotherapy but no specific mention of styloid.
My ENT would like to wait two months before doing anymore (although he did at least acknowledge Eagles as a possibility). His view is there’s nothing life threatening going on and with my history and internal damage he doesn’t want me to have either unnecessary CT scans or to be digging around internally.
In the meanwhile my symptoms are the same (the stabbing and throbbing in my throat being the worst) so back in 2 months to see if it’s subsided.
WHEW! So glad there’s no sign of cancer! Getting a CT scan will be very helpful in diagnosing ES if you have it (sure sounds like it as I said before). I hope the 2 mos seems to fly by.
If your symptoms get too uncomfy, asking your doctor for an Rx for nerve pain meds may be helpful. Amitriptyline, Gabapentin, or Carbamazepine (or relatives of any of these) have all proven helpful for our members.
Looking forward to your update in a couple of months.
Good that there’s nothing sinister going on…I second what @Isaiah_40_31 says about looking into some medication in the mean time & hope the time passes quickly!
I went back to the ENT for follow up; in the time since my last meeting I have had a couple of flare ups (they tend to last weeks not days). I also had a couple of issues of blood taste in my mouth, shooting pain from ear to jaw and one dizzy spell (including with seeing tiny light dots).
The ENT however (who is very nice) doesn’t think this warrants further investigation at this time and has prescribed me a super low dose of anti-depressant as a neurological pain suppressant.
Not really sure where to go from here, but think I will try and get a second opinion via my work health insurance.
So sorry that your ENT didn’t want to look into this further Hopefully the medication you’ve been prescribed will help with the shooting pain- if not there are other ones which you can try, it can take a few goes to find one which works!
The tasting blood you mention could potentially be CSF- others might comment on this as I’ve never had it, but if the jugular veins are compressed by the styloids, this can cause a CSF leak which apparently tasted metallic…
I don’t know if you’d be able to get a referral to Dr Jonathan Hughes, London? (ENT, published an article in ‘Top Doctors’ website) (Sore throat diagnosis - Eagle syndrome). Practices privately with the Circle Health Group in London. @PatientD has had surgery with him recently & he sounds very knowledgeable.
Good plan to get a second opinion, @VisibleJenky. I firmly believe your ENT is wrong. Your symptoms definitely warrant further investigation especially since the symptoms you mentioned are identical to those of our members who’ve got IJV compression from their styloids. Mr. Hughes is a great choice, as @Jules mentioned.
I have periods of what I would call remission and then flare ups (currently in one now). I had another MRI with contrast last week (to check against my last one) and assuming it shows nothing concerning in the soft tissue then I will be referred to a Neurologist. I have also asked to receive a referral to Dr Hughes simultaneously which I will do privately (thank god for private health insurance).
I have noticed some additional symptoms this time around (some may have been there previously and just not acnkolwedged) but as they are somewhat odd I wanted to share them here and see if anyone else has had similar. I would add that I have high TSH and subclincial hypothryoidism as a result of radiation therapy so some of this may be chalked up to that:
Freezing cold hands and feet (especially the hands).
A cold feeling occasionally in the inner ear and down the neck.
A light crunching (not clicking) sounds when turning my head to the left (right is the problem side though so who knows).
Occasional dizziness and white specs / floaters (typically when seated and nodding my head as part of a conversation weirdly).
Strong pulse in neck on right side next to thyroid.
Anyway, sure I will get to the bottom of it soon enough but wanted to share. Hope everyone is doing well.
I’m glad that you have private health insurance so you don’t have to wait too long for an appointment with Mr Hughes! But sorry that you have worse symptoms now…
Although not an ES symptom, quite a few members have Raynauds Syndrome, it’s an auto immune condition if you don’t know, and auto immune conditions do seem to be quite common with ES, maybe it’s the inflammation, that’s my non-medical opinion! Some members have had a cold feeling inside the ear, it can be a weird nerve sensation, possibly if the Glossopharyngeal Nerve is affected by the styloids.
Crunching sounds in the neck vertebrae are quite common, not necessarily down to ES…we’ve had quite a few mentions in the discussions about visual disturbances, floaters etc. Dizziness can be a vascular ES symptom, or otherwise could be due to the vestibulocochlear nerve being irritated. If you feel the pulse throbbing in your neck it could be compression of an artery maybe, that could be styloids, calcified stylo-hyoid ligament, elongated hyoid bone processes… If you have time you could do a search for discussions as all these have been mentioned, could be ES or something else…hopefully the scan might show something although an MRI isn’t as good for showing the styloids…Let us know how you get on!
Yes agree on the MRI, one of the (many) issues of being a past cancer patient is it’s all anyone really cares about when you go in for checks. But assuming they haven’t found anything sinister it will be time for a private referral and CT as this can’t go on too much longer (it’s exhausting!).
And thanks for the flag re Raynauds, I think I had a thyroid attack alongside whatever is going on (swelling at front/side of neck which was hot to touch) so I imagine my coldness is thyroid related (again a symptom of the radiotherapy I went through).
Good to have an update from you, @VisibleJenky, but I’m sorry your symptoms are such a problem. Having private insurance will definitely shorten the time before you see Mr. Hughes. I hope your MRI shows nothing sinister (to quote you) so you can progress with a CT scan or whatever else may help you get treatment to resolve or at least diminish your current symptoms.
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So glad there’s no sign of cancer! Getting a CT scan will be very helpful in diagnosing ES if you have it (sure sounds like it as I said before). I hope the 2 mos seems to fly by.
Hopefully the medication you’ve been prescribed will help with the shooting pain- if not there are other ones which you can try, it can take a few goes to find one which works!