Does this sound like ES?


I’m 23 years old. I have had horrible jaw pain for 5 or 6 years. Here are my symptoms:

Chronic throbbing sharp pain on both sides of jaw.
Left side way more painful that right.
Uneven feeling jaw.
Jaw pops on both sides
Sharp pain in ears.
Small swollen looking area under left side of jaw, below ear.
Pain intensifies with cold and long sessions of music listening.
I feel numbness and fullness in my jaw as pain increases.
Listen to music with earphones (internal or external) is horribly painful.
Pain can move into neck if it gets really bad.
No problems chewing or swallowing or turning head.
Can randomly flare up and get worse.
Pain gradually got to where it is now over a few year period.

I’ve been to around 10 doctors in Pittsburgh. After many doctors saying they couldn’t find the problem, finally one said it was Eagles syndrome and reccommeded me to another that said it wasn’t.

I would like to hear from others with ES whether or not this sounds like it or not.

Thank you.

A lot of symptoms sound like they could be ES, but can’t definitely say because some could be down to other things; the best way to get a diagnosis of ES is to get a CT done if you’ve not had one already. A 3-D CT will show the position and length of the styloid processes in relation to other structures in the neck, and also whether the stylo-hyoid ligaments have become calcified as well. If you can get a CT done with contrast (where they put a dye in through your vein to see all the blood vessels) then that is even better as that shows if any blood vessels are being compressed as well. If you do get a CT done, then it needs to be evaluated for ES, and check that they’ll look at the styloid processes and ligaments, and try to get your own copy if you can. There’s also lots of info about ES in the Newbies Guide- like common symptoms, what might be causing them, how to get diagnosed , treatments and also other possible diagnoses.
And in the Doctors Info section there’s also a list of doctors familiar with ES if you want to see someone else! (You’re not alone in having to see so many doctors- a lot of members on here have seen lots over years and had to travel quite a way, unfortunately!)
Hope this helps!

That is a long time to suffer! I hope you can get a CT to evaluate you for ES - fight for what you need.

I saw Doctor Snyderman from UPMC and I now have a surgery scheduled for August 24th. I am getting intraoral surgery on both sides. He told me that I will be feeling better in a week and fully recovered by 6 weeks. Does this sound like most people’s experience. I am going out of the country for school on October 7th, so my recovery is very important.

Glad that you’ve got someone to listen to you and have a date for surgery! Normally I’d say that you’d be fine to travel 6 weeks after your op, but sometimes intra-oral can be a bit longer to recover from, as your throat is likely to be very sore, and eating much will be difficult. (1 week is a bit optimistic!) Having both sides done at once could also make your recovery a bit longer, as swelling can be worse, obviously. We’ve had several members who’ve had surgery both sides recently, hopefully they can give you an idea of recovery. But you’re young, so you should heal much quicker than some of us more ‘mature’ members!!
We had a member a while back (sorry, can’t remember her name!) who went on a trekking and canoeing trip about a month after surgery!

Hi Star,
I had bilateral intra-oral surgery 4 weeks ago. I was told that I would feel
better in two weeks, but its still a slow recovery.
I did go back to work after two weeks but
the throat pain and soreness is still there. I took
the pain and antibiotics for 7 days, but am taking ibuprofen only when i feel i need it. I did get mouth thrush after one week and my taste buds gone right now - I had dental panorex , 3D scan, and CT without contrast.
the doctor never ordered a contract CT, but wished I had.
As jules said - you are young so maybe you will bounce back quickly.
i wish you luck, please keep us posted.

I have a few questions, littlemouth.

How much swelling did you have? How long did it take to go down?

How bad is the pain you still have? What are you currently unable to do or have trouble doing?

Hi Star,
You will do just fine!!! think positive
Doctor told me that it was difficult for him (but felt it was successful surgery)
because of the limitation of my mouth opening and that my tongue did swell, so when he got to the right side, he took out what he could safely. My tongue was swelled for two weeks. I didn’t think the pain was too bad, but i did keep up with the meds as directed. (note: we could not get any well known pharmacy to fill the pain med immediately (they said a week!) as they don’t keep these in stock due to opioid crisis, at least in Georgia.-- finally a small pharmacy was able to fill the medicine.) so please make sure you can get your prescription filled. I did need to use ice pack on throat and neck. I stopped all prescribed meds at 7 days. i still will take advil if need be. I was not able to open my mouth to brush my teeth, but I work at this each day and it has improved. Extending my tongue still gives me pain on both sides of jaw. Dr. said he pressed harder on right side so the pain was to be expected. After two weeks i did go back to work, i stand all day, so by evening i did ache, but I do not have trouble with anything. Taste is still distorted after 4 weeks. i am hoping that comes back soon. my followup is 9/5.
Other things i am addressing are spinal stenosis and moderate sleep apnea.
will be thinking of you 8/24. you will be fine to travel!
take care