Hi Everyone, I’ve been reading posts for a few months, popping in and out. I was diagnosed in March with EX after a little over a year of begging doctors to help me. At first, I was diagnosed with Trigeminal Neurolgia and put on Carbamazepine and gabapentin, both of which didn’t help me. I had face pressure pain that was indescribable, it felt like a vice trying to implode my nose, then I was told i had bilateral atypical facial neuropathy (stand for I don’t know what you have) than possible MS, I need brain surgry to, maybe you should try taking our a molar to go see an accuuncturist > chirpractor> neurosurgeaon > oral surgeon > orofacial specialist> and when it all failed the said go see a psychiatrist. then I woke up with a sensation that someone was chokine me, I couldn’t swallow, I felt crazy the inner corer of my eyes and the tip of my tongue burned with nerve pain, when I tucked my chin and talked my voice change, but the worst thing for me was that my left top three molars tingled with a furry that I Went to my dentest and asked him to remove them. he said no there is nothing wrong, i cried and begged him for anytes t possibel, even though I had already seen mulptiple dental spcialst h, had five sinus CT scan, fiesta MRI, myelogram MRI looking for a CSF leak, ascular spinal scans, all together over 25 mri/ct scans in less than 8 months ( thank god for amazing insurance, which unfortunetly runs out soon) he took pity on me and did an upper mandiable scan and low and behold he saw something that he couldn’t explain =, radiology called it “a finding”. The dentist sent me to an oral surgeon> then another Oral surgeon> then another ENT> who walked in, looked at my VERY FIRST scan from the first of many ER visits, and said You have Eagle syndrome. You need a neck CT, and there it was, 4.3 CALCIFIED LIGAMENTS on both sides. I then started having horrible chest pains and found out I was in AFib, every few hours a day, and had to have an emergency ablation, while recovering, i slipt hit my head and heard two snaps in under my ears, I’m seeing the doctor that diagnosed me next week for a follow up to surgery, but also have colsulted with two other surgeons. My question is how many of you have had Facial Nerve pain with Your Eagles?
Thank you for reading this far!
@Spedula - WOW! You’ve been through a lot to get diagnosed. Sadly, a number of our members have similar stories about seeing doctors who had no idea what was going on & ultimately sent them to see psychiatrists. I’m so glad you finally found doctor who knew about ES & was able to help you get a definitive diagnosis.
Very tough that you had A fib in the middle of everything & need the ablation surgery, but I’m glad that’s behind you now. It’s a bit scary that you hit your head & heard 2 snaps under your ears, but we do have some members whose styloids were found to be broken off from their attachment point so it can happen. Fortunately, muscles, tendons & ligaments sort of hold them in place.
Facial nerve pain is very common with ES since the facial, trigeminal & glossopharyngeal nerves, which can cause terrible facial pain, are very commonly irritated by elongated styloids. I had facial pain which went away after my styloids were shortened.
Here are drawings of where the trigeminal & facial nerves are in the face so you can see how they can cause teeth pain, sinus pain, nose pain, eye & ear pain as well.
Oh my goodness, poor you having so much going on! And sadly not unusual for members to suffer for years before they get diagnosed 
I had trigeminal nerve pain too with ES; I’d had neck , ear & jaw pain for quite a few years which I put down to a whiplash injury & wisdom tooth pain, then I started getting pain in one molar but there was nothing wrong with the tooth, like yours! I had a salivary gland stone as well & had investigations for that which was when I was diagnosed with ES… I take Amitriptyline which helps- the pain is alot better since surgery but still have a niggle, I was getting pins & needles in my face & numbness before surgery & that’s gone now.
I hope that you’re able to have ES surgery, what will you do about your insurance? 
My insurance covers my provider, who diagnosed me and he is an amazing surgeon, just doesn’t see as many cases of ES anymore, due to teaching at the university, he only allocates 1-2 days a week for surgery and focuses on Hyoid surgery. We will have a different insurance carrier as of October but it will not be a top-tier gold standard insurance, i have never needed even a prior approval for all of scans, it’s been amazing to not have to worry about the finacial aspect of it. we will just have a basic plan in october.
I’m sorry your insurance is downgrading. in Oct, @Spedula. That’s very unfortunate timing for you.
Yes, I had severe pain like an ice pick in my ear through the cheek and behind my nose. Thankfully it was intermittent.
I also had some paralysis and my mouth drooped on one side, drooling too. Such a journey we have. I’m sorry you have gone through so much.
I felt all better after surgery. I still have a styliod on the other side but no symptoms.
Great news that you haven’t needed your other styloid resected @Katflorida, but even better that your symptoms have resolved with one surgery!