Eagle Syndrome

@travelgirl

I would just like to say with all of my heart for everyone here talkin about this rare disease/condition, THANK YOU TRAVELGIRL!!! If you had not written of your son, I know that I for one would not have found this site and thread and in turn many of the answers that I needed. So for myself and perhaps I think many others, thank you @travelgirl for being such a great mother and for always even to this day being there with an answer!!!!!!! Thank you @travelgirl!
elimpert96

@de9g
The most important thing I believe for you to look at is how much longer/ over calcified the one side is than the other non symptomatic side (unless you have an extremely rare case of both sides being elongated and symptomatic). But yes from what i have read i dont know how yours could be 60mm. This in my opinion is a miss measurement/calculation by whoever analyzed the scans. They may have noted at 60mm the length of the tendons/ligaments that attach to the stylo process connecting it to the top and bottom of the jaw.
These tendons/ligaments cause most of us with Eagle Syndrome to have jawline toothaches in the 3rd-5th molar range that seem underneath the teeth themselves. This is because the tendons/ligaments attach there on our jawbone below/above our teeth and eventually become strained and act abnormally due to the irregularity in the stylo 's length/over-calcification.Thus these tendons and ligaments begin to abnormally pull or put pressure on the jawline in the area usually associated with the 3rd, 4th, and 5th molars. The stylo process is the anchor point for these tendons which I believe controls a large portion of our Jaw movement (mainly lateral movement i believe)

Sorry to rabbit trail on you de9g but maybe this
Info will be useful to all of those making and paying for dentist appointments and not finding anything wrong.

@elimpert96 Awww.. You are so kind..
I am so happy this feed is helping so many.
That was what I wished for.
I also pray that each person finds relief with the least invasive surgery possible.

God Bless you all.
Jackie.

I have eagles syndrome as well. I always had a sensation like there was something in my ear. So I would always stick my finger in my ear and wiggle it around or lick the back of my throat (if that makes any sense) to try to make it go away. To no avail obviously. It started to rapidly progress from my early 20s to early 30s though. Hence why I have the diagnosis now. Headaches that would come in bursts lasting anywhere between a week to a month or more at a time coupled with ringing ears, my teeth hurting, my ears hurting, a lump in my throat that never goes away, spears in the back of my neck the base of my head area. Just so much pain. And after days upon days of this of course it radiates and encompasses almost the entire top half of my torso and head at this point. It's maddening. I'm wondering if anyone else gets headaches from these??? These are 3d renderings of CT scans I had. The neurologist I go to right now tells me they can't grow because I'm an adult. And I think she's wrong as hell because mine have progressively gotten worse symptomatically since my early 20s. I'm 32 now. She just keeps throwing pills at my head, worst part is they don't work most of the time anyways. haha. I wish someone would snap these things off so I didnt spend 3/4 of my life in a crippling headache.... I can't even play with my kids half the time. Eagles syndrome is a quality of life ruiner... that's my opinion.

I do not know which came first, but I sure wish there would be a new study on this and other causes of the ear/neck/headache issue. Thought I was inching forward and 3 doc visits this week show me I'm at step 1 again. More tests, more ruling things out while symptoms increase. Seems like 25 years of tests would have answered some questions by now. I heard there is an injection that would be fairly accurate on a yes or no answer for ES so why not give the shot and rule it out? Instead docs need another CT scan, another MRI to rule out Otosclerosis, ETD, atypical Meniere and probably hypochondria. Didn't log on because I thought I would have good news... wonk, wonk... Disappointing!
BTW, I had that spasm, but only one time so I didn't relate it to ES.

Has anyone had a CT scan show a mass lesion? What is that?

Sorry all for so many questions, but has anyone been told styloid surgery is not for a neurosurgeon, but a neck surgeon?. A neurosurgeon told me that today.
Does anyone have high resting heart rate? Mine has always been mid 70s now it's high 90s?
What's longest headache anyone has had? When I tell docs I have one headache that last months no one seems concerned. My PC has to give shot to "break" headache. OTC and prescribed do not work.

What I learned is that an ENT is the one will conduct a styloidetomy. So sorry to hear about the headaches, I’m sure that can be tormenting.

I have had a headache that's lasted for up to 2 months. It broke for a few days with slightly less pain here and there but it stayed painful for that long. My resting heart rate has always been in the upper 90s sometimes low 100s.

For clarification, has your resting heart rate been high since ES or even before? Thanks. My rhetorical question is, why headaches? I understand ear ache/pain, jaw, neck, throat and tongue issues. I do not get why the headache is THE constant.