In 2011 or 2012 I was diagnosed with Eagles by a dentist after a panoramic xray. My entire life I lived with a neck that was always a bit stiff and I also had some neck turning limitations. All of this not crazy bad but every now and then a few times a year my neck particularly if I was stressed or physically tired I would get a sharp searing pain from my neck up to my ear. Over the past 9ish years I’ve had GERD like symptoms of a dry cough and horrible throat clearing. I’ve had a few esophageal spasms in my life maybe 5 up until the past couple of years and they are becoming more and more frequent like once a week. This morning I had an epiphany that they seem to happen when I have my head turned to the left and also oddly enough I also realized that I have “pillow ear” on my left side. It’s like finding a missing puzzle piece and realizing it may very well be the entire problem. Other symptoms that are minor are jaw clicking, neck clicking, random ringing in the ears, etc. The dentist said their department could fix it back in 2011 but I was like no thank you I can live with it. And I will add that I believe the reason it has become worse is because December 2018 I had a terrible car accident seemingly OK but I think that accident exasperated this stupid ligament! It was a day or two later that I felt the neck searing thing going off a lot! And makes you wonder is the searing pain due to it growing further like “growing pains” OK that might be a bit of a stretch but a hunch 
If i touch my neck on the left like I’m taking a pulse i can feel and hear a clicking sound also. So after all of this long winded post I would like to know from others what type of surgery they had and the success rate and down sides of it because I for sure want surgery done ASAP and also can it be done with local because I have terrible reactions to anesthesia and even pain killers. Thanks in advance for your help and I am very happy to have found this support group!
As it’s been a while since you were diagnosed, it sounds like it might be helpful to get a new CT done to see if the ligament has calcified more or if your styloids have grown longer- this can happen with time, especially if you’ve had a neck trauma since your last imaging… If you are able to get a new scan, ask for it to cover your neck from the skull base to the hyoid bone, as some of your symptoms like the clicking can be from ES but also could be if the hyoid bone processes have grown longer too… It’s a good idea to check this before you decide about surgery as if the hyoid bone is causing issues that would need a doctor who specialises in this.
The surgery is often done as an outpatient but under a general, if you react to meds you would need to talk to your doctor about this. We’ve had some discussions about reactions to medications, so hopefully others will chip in with their experiences… Have you considered MCAS? Quite a few members have this, it could be that the vagus nerve is irritated from ES (which could be causing your cough), & this can affect histamine & allergies…
This discussion might be helpful:
Pain Meds Post Op with MCAS - Symptoms and Treatments - Living with Eagle
Success rates for surgery are good as long as you see a doctor with experience, and enough of the styloid process is removed- there’s info about surgery here:
ES Information- Treatment: Surgery - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
And here’s a link to the list of doctors familiar with ES:
Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
You can search for doctors’ names in the past discussions to see when members have seen them, I don’t know much about the doctors on the list in VA, otherwise Dr Hackman in NC is very experienced with the surgery.
Thank you for the helpful post and links. As far as MCAS I for sure do not suffer from that, I do however have Alpha Gal Syndrome and have had it since 1993 but was not diagnosed until 2015. Had no idea that AGS could have killed me, thankfully it did not! It has been a blessing though to figure out what all of this really is just like finding out I had AGS it was a blessing. Also whatever Dr’s are recommended they have to take Medicare I can’t afford this out of pocket ):
I’ve heard of the AGS, that’s a really weird thing…I’m UK so we don’t have quite so much of a problem with ticks, although there’s just starting to be a bit of awareness with Lyme…
I’m not sure about which doctors take medicare I’m afraid if there’s no note by their name on the list, hopefully other US members can help give you that info, @Isaiah_40_31 said this
‘ENTs affiliated with a hospital generally take Medicare because hospitals are required to take it. Dr. Hackman (UNC ENT Oncology Clinic/NC Cancer Hospital) in Chapel Hill, NC & Dr. Cognetti (Thomas Jefferson University Hospital) in PA are examples of doctors with hospital affiliations. ENTs who are skull based surgeons are usually cancer specialists.’
So it sounds like Dr Hackman might be!
Not sure if the Lone Star ticks are in England yet but they are in Australia. A young man just recently died from AGS in Australia. My allergist is convinced that hundreds of people have died from it they just have no clue what they had. Just like Eagles Syndrome, AGS is also severely under diagnosed or people go to a GI Dr. and they swear they have IBS or EoE. I found out about my Eagles by going to a dental school and having a panoramic xray and the dentist saw it and told me, otherwise I would be sitting here convinced I have GERD.
@Gigineck - I hadn’t heard of AGS so I learned something new from your post. Doggone those ticks! They sure do cause a lot of problems that are hard to diagnose!!
You certainly have a lot going on & have had ES for a long time. @Jules has given you thorough information as to what your next steps could be so I have nothing to add. I agree with you that most, if not all, of your current symptoms could be caused by your styloids.
What Jules said about Drs. Hackman & Cognetti taking Medicare is correct plus both do surgery for hyoid bone syndrome & ES in case you need that. You’ll need to call Dr. Sinacori’s office to ask if they take Medicare. •Dr John Sinacori, EVMS Otolaryngology, 600 Gresham Dr Suite 1100, Norfolk 757- 388- 6200, https://www.chkd.org/Our-Doctors/Surgical-Specialists/CHN-Practices/EVMS-Otolaryngology/John-Sinacori,-MD/?utm_source=local-listing&utm_medium=organic&utm_campaign=website-link
I had ES w/ IJV decompression surgery in 2024 which Medicare covered completely so I hope you will have a similar experience once you find the right doctor.
Thank you that’s great information and glad I could pass along Alpha Gal info Funny story about Eagles…Back in 2011 when I was diagnosed and turned down treatment because my symptoms were not that bad I was reading how “rare” it is. Was telling someone at work in the break room about it and a coworker walks in and says I have it too! Then she says “go across the street and see Dr. Stephen Early he is an expert with the surgery”. His office was literally in the building across from my office, now he is retired ): ugggg!!! But does it make you wonder how really rare is this and how many people are just misdiagnosed just like Alpha Gal. I am betting lots of people with Eagles are diagnosed with GERD and AGS people are diagnosed with IBS or EoE or gluten intolerant.
Yes, we believe here that ES isn’t actually that rare! Just rarely taught in med school, or doctors are told it’s not even real…I think it’s only because of the internet that people can search online now for their symptoms and self-diagnose, certainly alot of new members have got their diagnosis this way!
It’s a shame that patients are not taken seriously when they talk about their symptoms and sadly they are given these vague diagnosis. Personally I think the internet can be a really powerful tool for people as they navigate an illness. Yesterday I realized that there was a common link with all of my esophageal problems and it was wild…The problem stems from my turning my head to the left, 3 times I was eating dinner or lunch and someone was sitting next to me and i turned to listen and all 3 times I had this crazy esophagus problem. Also my left ear is the one that aches sometimes when I’m in bed. I can’t wait to get this fixed!!! I am so happy I found you all here, this for me is a huge blessing!!! Thank you all for your support and knowledge 
!!!
@Gigineck we’re glad you found us, too, & got answers that will help guide you to getting your life back!
Funny story about Dr. Early. Too bad your symptoms weren’t worse then. I recently saw his name on our Doctors List w/ a note that he was only doing ES surgeries for children now. I’ll have to go in & take him off the list since he’s retired & operating on no ages of people anymore. We always hate to lose a doctor from our list even if it’s for a happy reason such as retirement!
I’m glad you connected the dots about the symptoms you get when turning your head to the left & regarding your night time ear ache. I had a few AHA moments myself once I was diagnosed. ES causes the most diverse lot of symptoms & each one of us seems to get a different variety which makes it even more novel.
Hopefully you can avoid head turning as much as possible now you’ve twigged it’s contributing! And hope that you get this fixed soon !