First just wanted to say thank you to everyone who posts here. It has been an amazing help and resource for me. My question is my doctor (Navy orofacial dental) suspects I may have Eagle Syndrome and but has mentioned that in my scans from a few years ago my styloids are basically unchanged. They measure 4.8 cm left and 5 cm right. He stated that since they haven’t changed and my symptoms only started about 7 months ago it makes him question whether they are causing my pain. Could symptoms start randomly with no change in styloid length? My symptoms are on the left side only and consist of the feeling of a painful object stuck in left side of throat, left ear pressure and sharp pains,burning stinging pains under left jaw, and pressure along left side of neck near jugular. Thanks for any insight you can provide. Also, I’m in the Navy so if there’s any military personnel here I’d love to hear your story since our medical system can be difficult to deal with.
Welcome to the ES forum! So glad you’ve found us!
In answer to your BIG question, YES!! It’s thought there are many people who have ES asymptomatically. I can’t answer for sure what would change to cause you to go from asymptomatic to symptomatic, but it’s possible that even though the length of your styloids is unchanged, they’ve gotten thicker as time has passed or perhaps a bit more angled, & as a result, are now making contact with nerves in that area of your neck. Another possibility is that your stylohyoid ligaments have started to calcify. If your doctor is only looking at the styloids, the calcified ligaments could be missed.
Normal length styloids are 2.54-3 cm so yours are definitely on the long side. How fortunate that you’ve lived for several years without symptoms! The symptoms you do have are very typical ES symptoms. We find on here that most people have some of the typical symptoms & then some that are unique to them individually.
Surgery is the only “cure” for ES. The more practiced ES surgeons require their removal via 2 surgeries - 1 for each side. They remove the styloid process at the skull base when possible & also remove the stylohyoid ligament to prevent the possibility of its calcifying later on.
I hope this info helps as you proceed with deciding the best course of action for you.
There are a few known causes of ES- tonsillectomy, neck trauma & metabolic disorders for example, but ageing can also be a cause… Not wishing to get personal about your age, but it’s possible that as connective tissue isn’t as good as we age that the styloids start to come into contact with nerves etc. whereas they might not have done when you were younger. Also members as they learn more about ES find that some of the symptoms they’ve had for years, but didn’t realise it was ES, like ear pain for example.
I’ve had ear, neck & jaw pain for years on &off, but was only diagnosed in my early forties when the pain worsened. Also when I was diagnosed I didn’t have any vaacular symptoms, but then these started a couple of years later! So it can change even if the styloids are the same length. (I had a disc problem with my neck around the time the vascular symptoms started, so can only presume that it shifted things minutely enough to cause symptoms, or maybe age made the blood vessels less springy & more easily compressed?!)
If you search the past discussions you might find out if there’ve been posts from anyone who’s had treatment through the Navy.
Wow thank you for the info. Come to think of it I’ve had ear pain off and on for many years and whenever going to checked I was always told it was probably an infection that they couldn’t see and given antibiotics or Motrin. Must have happened 5 or 6 times in the last couple years. As far as age goes I’m definitely not as good as I once was , and being in the military seems to age people exponentially so that’s definitely a possibility. I’m hopeful to get referred to a civilian ENT with experience because this is taking a HUGE toll on my family, career, and life in general. Thanks again!
your symptoms are the exact same as mine, even down to going to the doctor about ear pain and sore throat and told that I had no infection. Glad to hear that you have a diagnosis. I agree that the stylohyoids are probably the reason for the increased pain, they calcify and do not show up in the scans. That would explain the burning jaw pain and the feeling of something stuck in your throat. Good luck and thank you for your service. You deserve better medical care.
I second Emma’s sentiments - Thank you for your years of military service, so we can continue to live in a free country! AND, I agree, your medical benefits should be top-notch for the service you’ve provided & continue to provide for our country!!!
Thank you Emma and Isaiah as well. I appreciate your insight and help. It’s a privilege to be able to serve and I’m very blessed and thankful. Our medical care is great for anything basic but once you get even remotely complex it seems to be lacking at least from mine and most others experience. Still I’m very thankful to have access to it basically free which is a huge plus, so I guess I’m ok with jumping through a few extra hoops in that respect .
I’m going to a neurologist next month because they want to definitively rule out Glossopharyngeal neuralgia. I highly doubt that’s what’s causing my pain but they do share similar symptoms. Looking at my 3D CT scans the left styloid is offset much more than the right and curves out towards the left side then down to the corner of my mouth. I can feel the sharp tip in front of my Palatine tonsil in the corner of my mouth. That’s probably why I have stronger symptoms on the left but who knows. Wish me luck with my appointment and if there’s any advice or questions you think I should ask the neurologist feel free to let me know. Thanks again!
Hi Maison22 -
It’s always wise to expect the new doctor you’re seeing knows nothing about ES. Taking along medical research articles (many available in the Newbies’ Guide) which validate your symptoms as related to ES will help you advocate for yourself & your ES diagnosis. Hopefully the neurologist will be willing to listen to you & not be dismissive due to ignorance about ES. That’s always the most frustrating outcome of this sort of doctor’s appointment.
ES is mentioned as a cause of GPN, so even if they do disgnose you with it, it doesn’t rule out you having ES. Ben’s Friends also have a Facial pain group you could look at for more info about nerve pain medications etc.
Thank you Jules. I’m on Gabapentin currently and it’s not really taking away any pain but it has helped with anxiety. I really appreciate all the help. I’ll post again after I see the neurologist.
Yes the skull base cancer surgeon who just removed my styloid and stylohyoid knew it was Eagles, but he specified that I had Glassopharyngeal neuralgia from Eagles. In fact our pain is most GPN and sometime Trigeminal Neuralgia, I believe hypoglossal neuralgia is the burning of the tongue. There is one other, I think but mostly the GPN. There are many other symptoms but stick to the ones that the least familiar doctors will know. Those are the ones we have talked about. If you have other symptoms keep them to yourself until you feel you have a good doctor who understands, otherwise trust me the doctors get blurry eyed and unfocused. The big no no is Tinnitus. They do not like you to say that. Tinnitus can be treated as tinnitus, but if you have it and mention it in relation to Eagles, the doctors think you are in the wrong place.
Thank you! I’ve actually had a lot of other symptoms that I know are related and when I mentioned them to the ENT I could tell he kind of freaked out. After that is when he said he didn’t know what he could do for me and I was sent to the orofacial pain doctor. Pretty sure he thought I was crazy, or he just had no idea how to help. Nevertheless I’m hoping the neurologist can at least keep me moving in the right direction. I’m just going to mention my main symptoms (foreign body sensation, ear pain and pressure, painful swallowing/speaking). Thanks again!
Yes, keep to the better known symptoms, Heidiemt gave me that advice earlier on in my journey, as you’ve found out the doctors can freak when you mention an unknown symptom…
Quick update…went back to the ENT today (follow up for a septoplasty I had done last month) this is the same one I had seen initially for my Eagle symptoms. I Let him know I’m still dealing with the pains and (playing dumb) asked him about the sharp pointed bone I could feel in my mouth just behind my lower teeth. He seemed surprised that it could be felt and did a lidocaine injection to see if it helped. I let him know it felt better after the injection, not great but better. He said he’s still skeptical that it’s Eagle Syndrome but that the head ENT in the hospital has done a few surgeries in the past. Seemed liked he didn’t have confidence that it would help and said most of the patients that have had it done didn’t get relief. He said that after my neurology appointment if they don’t find a solution (glossopharyngeal neuralgia etc) that we would discuss possible surgery. I’m really not comfortable with the doctor there because of his lack of experience and overall confidence level. I’m definitely going to request that I be seen by a doctor who has experience (and success).
Also, he stated that because I didn’t have an increase in pain when turning my head that it made him especially skeptical. I didn’t want to argue but you don’t always have pain when turning your head with ES correct? Also, is there always pain when palpating the styloid through the mouth? Because I didn’t feel much pain when he did, although I do get ear/throat pain at times when I press on it myself. Thanks!
Symptoms do seem to vary alot between members- I never had the classic symptom of feeling stuck in the throat, nor was swallowing ever difficult for me. So just because you don’t have one symptoms it doesn’t rule out ES. Some doctors use the lidocaine injection as a diagnosis tool, so if you found it helped that’s an indicator you could have ES . Not everyone can feel their styloid in the throat either. Usuallu it does cause pain when pushed on, but there don’t seem to be rules with ES!
As for not many people being operated on/ having good results by the ENTs group you saw, you’ re wise to be wary; that’s often because the doctors don’t remove enough to help! I can’t remember the figures, but there was a small scale research paper which talked about success rates- I think it was quite high, but they mentioned surgical technique as a reason for not good results.
Hi everyone the past few months my symptoms have died down a lot, and my surgeon has given my the option to wait till pain gets bad again. But now I have a new symptom and I’m sure it’s related to ES. It’s a nerve pain in just one tooth the front side one which happens only when I swallow or movement of my head and talking, it’s not constant. I don’t want to go the dentist with this as I think it would be pointless. Anybody else have this or read about this as a symptom? It’s really getting me down. Don’t know what to think as none of my other symptoms have flared up.
Hi again forgot to mention I came across a new article from 2017 on the internet about a new endoscopic surgery for eagles which is supposed to be very good. Anybody heard of this?
Hi, after reading some of these post, these issues presented themselves early on and no one realize this as a rare condition. I was given Gabapentin, it had bad reaction for diabetic neurapaty . Went to Tramadol but this was before the E.S. diagnosis. One ENT gave me Tynolel 3 which caused other issue. My appointment is Jan. 14, for a Dr. in my area. My new insurance company sent me 3 other Medical Groups that may.help. the funny taste in mouth, feeling something in throat, eyes and both ears issues, exhaustion, dizziness, everyday some other strange feeling, pain in bi-lateral neck are worrisome.
The Trigeminal nerve can be affected by ES, it has 3 branches, & one of those goes along the upper jaw to the teeth. If you google images for that nerve, see if it goes to the area you’re describing, it could be ES. Given that it’s happening while you swallow or talk as well…I get nerve pain in a couple of molars, although that’s constant- I’ve had them checked a few times at the dentists & they’re fine! Nerve pain medications help, there might be something which helps you, if it’s bothering you alot?
& I’ve not seen any new research papers, I’ll have a look for it, thanks!
That’s the funny thing about ES. The symptoms it causes can come & go & new symptoms appear just when you think you are already experiencing more than you want to deal with. If your insurance is referring you to medical groups who have doctors w/ ES experience then you’re in good shape. If they’re referring you to specialists for your specific symptoms then not so much as treating the symptoms will only be a band-aid. Treating the cause of the problem (ES) is the only more sure fire solution.