Let me start by saying I have not been diagnosed with Eagle Syndrome. I have just been relentlessly searching for anything that could provide answers after years of suffering and I think I may have found it.
I have had dysautonomia (specifically POTS) for almost a decade. In addition to POTS I have had intermittent tingling and numbness sensations in the right side of my face, ear ringing, random sharp jaw pain on that side, cluster type headaches, blurry vision etc. I have POTS every day, but these other symptoms come and go. For over a year now though I have had the CONSTANT sensation that something is stuck in the right side of my throat near my tonsil/back of the tongue and even under my jaw. I tried antibiotics, a PPI, been scoped twice, had a mucocele in that area removed and biopsied, and had a CT with contrast of my neck looking for, I presume, cancer.
None of the medications made any difference at all. The ENT doesn’t see anything concerning on the scan or in my throat and told me the last time I saw him that it is possibly a nerve issue that he just can’t see. It is maddening. While I would not necessarily describe it as painful, it is incredibly uncomfortable.
I just picked up a copy of my CT (on a CD) and was hoping that if I’m able to share the image here maybe someone with experience can let me know if this diagnosis is worth pursuing. In the meantime I have an appointment with another local ENT about a month out just trying to get a second opinion. The written interpretation of my scan that I received makes no mention of any of these structures having to do with eagles so I’m not sure if they didn’t evaluate them or if they didn’t even scan for them.
I was wondering if anyone with Eagles thinks this sounds familiar.
Pre surgery I had some of the symptoms you described - ear pain and ringing, feeling of something stuck in my throat, constant headache. Often times the styloids can get tangled with our nerves and one treatment people have tried is a nerve block in that area.
It may be that your CT wasn’t evaluated for Eagles and if that’s the case you should be able to ask the new dr to review it. However to accurately measure the styloid you’ll need a frame that starts at the base of your skull. Though none of us are drs ourselves, if you can upload one or a few photos we’re usually pretty good at seeing the styloid(s) on scans. I hope this provides answers for you!
I also have not been diagnosed with ES. I do have dysautonomia . And every symptom you’re complaining about as well as others. I’ve also had a mini stroke. (Transverse sinus occlusion).
My Ent has never heard of eagle syndrome. I’ve had a pet scan, a gallium scan, MRI’s etc. I found a doctor in Lakeland that I might try who seems to know about eagle syndrome. I’ve tried chiropractors, pain clinics, neurologists.
I had an appointment last March with an ENT listed on this site,but was canceled because of Covid. I get my first vaccine this week I’m hoping in a month or so I can head up to Lakeland. I feel for you, Dysautonomia alone is very difficult to live with.
@Sandal3 I’m so sorry to hear that you also suffer from dysautonomia. It is quite awful. If it weren’t for my son I would have given up by now. I’m just praying that I can find answers. I feel like no doctor has ever taken me seriously. I’m tired.
What are your symptoms that you think might be eagles?
Your mini stroke makes it sound like you might have internal carotid artery compression caused by your styloid. I’m so sorry your appt last March was cancelled. I’m surprised they didn’t allow you to reschedule to a later date. Very disappointing. COVID19 sure has made it hard for a lot of our members to get diagnosed &/or treated. I’m glad you’ve had your son to help you through all this.
Please let us know how your next appointment goes.
I have loud pulsating ringing in my ears, ear aches, numb feeling in the left side of my face. It feels like something is stuck in the back of my throat or like something is prying my throat apart. My voice sometimes changes. I have a lot of trouble swallowing at times and sometimes aspirate… Headaches and strange sensations in the back of my head. But, my symptoms mimic myasthenia gravis also. If I lay flat and still for a while, I improve . I tested negative for MG.
Good luck in your search for help. It’s so frustrating when you are told “it’s all in your head”. If anyone could ever step in our shoes I think they would be pretty shocked.
I was also tested for MG years ago and it was thankfully negative. I say thankfully because I feel at this point the issues just keep stacking up. Of course deep down I’m hoping my dysautonomia is caused by ES. My throat is best in the morning and gets worse as the day goes on. Does yours follow that pattern?
I was told my Dysautonomia was caused by small fiber neuralgia.
When I see a new Dr. I am very reluctant to relay all of my symptoms. Many are overwhelmed and not up for the challenge… And the ones with big ego’s would rather blame it on a psychological problems rather than admit they don’t know. I am thankful for support groups, without them so many of us would probably give up. In fact I was at that point when an episode of “The Good Doctor” featured Eagle syndrome. A friend told me to watch it. It was the first time I had ever heard of it.
That’s lucky! Hopefully it can explain your symptoms. I also tend to hold back most of my complaints to my doctors but I wonder if we laid it all on the table if we would have better luck finding the cause. I have been tested for SFN and was negative. All of my issues started after the birth of my son. Before that I had not a single complaint. I always wish I never took my health for granted before.
Unless a radiologist has specifically been asked to review the scan for ES, they rarely note the styloids, or any calcification, so if you can put it on here we’d happily have a look & give you our novice opinion, & whether it’s then worth getting reviewed to see by a more experienced doctor/ radiologist…Certainly the symptoms you have are common with ES.
Did you look at the Doctors List in the Doctors Info section? There’s a couple of doctors on the list in Illinois:
•Dr Jason Cundiff, Crystal Lake (Does intra-oral and external surgery) http://jasoncundiff.com/
•Dr Miloro, University of Illinois, Chicago 312- 996- 7640 http://hospital.uillinois.edu/Find_a_Doctor/Michael_Miloro.thm
It’s certainly worth ringing ahead to see if the next ENT doctor you’re seeing knows about ES, rather than wasting your time?
I’m hoping I can show my scans to you all tonight. I can’t express how grateful I am to have people willing to at least look at them for me. The one thing I’m reading a lot on here is about very bad pain. I really would say mine is rarely painful thank God. It’s more of a pressure and choking sensation but only on one side in the back/side area by my tonsil. I agree that it may be worth asking the new ENT if he’s familiar with Eagles, but when I made that appointment it was more just to get someone to look into it more since the last ENT pretty much threw his hands up. I’m trying not to get my hopes up too much that I may have found the answer. It’s funny growing up you think people just go to the doctor and they are fixed, in reality there are millions of us suffering with various ailments for which there is never an answer.
Not everyone has severe pain w/ ES. The symptoms you’re describing are also common. I think people who are in pain tend to write more posts because they need more support than people who have milder symptoms. I had trouble w/ choking sometimes when I ate as one of my early symptoms. I also had pressure at the back of my skull, under my tongue at the base & behind one eye so not in exactly the same place as you do but pressure nonetheless. I did have more pain than you do but our bodies are each unique & will respond differently even to the same irritant.
I will watch for your scan images. I hope you’re able to post them.
I have similar symptoms with the choking feeling in the throat and plenty more with the trigeminal pain in my face and pain down the front of my neck. I got lucky and saw an Orafacial pain specialist. A dental professor at the Rutgers school in NJ and he diagnosed me right away with Eagle’s. All the ENT’s I saw, head neck surgeons, emergency room docs never saw it… Just figured I had anxiety and take more drugs…
Maybe you can see if there is an orafacial pain type doc in your area.