Hi everyone, i am new to the group. I have suffered for 3 years with ear pain, pain at the corner of my jaw, pain behind my eyes and headaches. I have always been treated for sinus pain but was then referred to ent as medical treatment did not help. He confirmed that it wasn’t a sinus problem but did a ct to rule out eagle syndrome. Sure enough i have elongated styloid processes and calcified ligaments? However the 2nd consultant i saw after the ct said this didn’t necessarily mean it was eagle syndrome, he said he would be reluctant to do surgery as it is very invasive and might not make a difference, i am currently being trialled on amitriptyline. Has anyone else had this type of experience with an ent consultant? Reading on line it seems that the surgery can be very successful.
You’ve never been told you have TMJ?
Eagle Syndrome by definition is elongated styloid(s) or calcified stylohyoid ligament(s) or a combination of the two. Since your CT scan revealed you have both, you definitely have ES. The second consultant you saw was incorrect in the assertion that you don’t have ES. There have been people on this forum who have successfully but temporarily treated the pain from ES w/ amitriptyline but inevitably needed surgery as the pain & other symptoms overrode the effects of the medication over time.
If you have the ability to travel to England, there are at least 2 & maybe more doctors who have done ES surgeries for several people on this forum. Their names are on the current Other Countries’ ES Doctors’ List which you can find by clicking on the magnifying glass at the right above & entering 2017 (the link to the list should pop-up right away & you can click on it). The Newbies Guide is under the HOME tab above left. There is lots of other info in the Newbies Guide that will be helpful to you.
Jules, one of the moderators for this site, had her surgeries done at Cambridge. She has used amitriptyline for her nerve pain. I’m sure she’ll chime in shortly to offer some further info for you.
Obviously some of the pain you have sounds like sinus pain, so I can see why you were treated for that, but as it hasn’t helped, that’s clearly not the cause… because ES surgery is risky (it’s a very cramped space, with major blood vessels & nerves squeeezed close together), alot of doctors won’t do the surgery, & no doctor will say that it will cure all your symptoms, because they can’t guarantee it- it’s a very common thing on here that people are sent away from doctors who’ve said that they don’t think it’ll help your pain… But surgery should be thought about carefully because there can be some risks- usually members get to the point where their symptoms are affecting their quality of life so badly that they’re willing to take that risk, but not everyone has it. I put it off for a couple of years, (& the local ENT consultant told me he wouldn’t do the surgery, it was too dangerous) but the nerve pain was getting worse with tingling & numbness on my cheek as well, & I had some scary vascular symptoms too, so I found out about Mr Axon at Addenbrooks on here and asked to see him- he is a very good surgeon.
Otherwise if it’s too far to travel then you could look into any Otolaryngologist/ Skull base surgeons nearer to you, as they work in the area of the styloids, so would be more experienced & hopefully confident to do the surgery.
There’s info in the Newbies Guide section about ES symptoms and what causes them- you could have a read of that & see if it fits- the jaw & ear pain could be caused by pressure on nerves like the Trigeminal Nerve. Amitriptyline might help- it’s helped mine- but there are other nerve pain medications which could help if it doesn’t, which might be worth trying while you think about surgery.
Thanks, i really don’t think i would get funding to go to england for surgery. Wierdly the consultant i saw sounded like he would do it if i decided i wanted it! I have an appointment in 6 months to see him again, i will definitely try the medical route first, i should know by then if it is succesful or not. Thanks for your advice.
There’s lots of advice about what to ask the doctor about before surgery in the Newbies Guide section, so if you think about it in the future, it’s best to read up on that & to make sure the doctor knows what they’re doing!