I started having the feeling of something stuck in my throat in 2019 after having my wisdom tooth removed. I went to the Doctor, they gave me antibiotics and a shot of steroids. They also did a strep test and not strep. Within the next 2 weeks my ears began to pop. The only way I could explain it was that I felt like fluid was in my ear(my left side) More medication, no relief. Went to an ent, got sent to a gastro because they thought it was acid reflux. Had an upper gi done and my esophagus stretched. No relief. My left tonsil was swollen. nothing abnormal according to my ent, but he removed them at my request as well as my adenoids, still no relief. Symptoms got worse, I had food and meds getting stuck in my throat, pain in my face, pain in my eye, pain in my throat. the feeling of something stuck at the back of my tongue. In sept. of last year I was finally diagnosed with Eagle syndrome. I am wondering what symptoms everyone has. Currently my facial pain is really bad. I feel like I have knots in my cheek. I have had bleeding of the nose. It hasn’t been recently, but I do have pain in the nose, around my eye, pain in the ears, throat, etc.
I had problems w/ choking on food (had an upper GI, too!), pain in my face (trigeminal & facial nerve), eye & nose pain & loud tinnitus in my left ear (trigeminal nerve), throat pain (vagus & glossopharyngeal nerves), the feeling of something stuck at the back of my tongue (hypoglossal &/or glossopharyngeal nerves), the feeling that my gums had been scalded w/ hot water (this came & went - maybe trigeminal nerve)); heart palpitations, random low blood pressure (happened especially when I exercised - vagus nerve), racing heart rate (to compensate for low bp - vagus), breathlessness (it was a packaged deal w/ the low bp & rapid heart rate - vagus); pain in my collar bones (accessory nerve), & probably some others I don’t remember at this point. Someplace in the old threads from 2014-2015 I made a post which listed all my symptoms.
Six of our 12 cranial nerves can become irritated by ES - trigeminal, facial, glossopharyngeal, hypoglossal, accessory, & vagus. The vagus nerve is the largest of our cranial nerves & affects our bodies from skull base to pelvis. It it “in charge” of many of our bodily functions. You can consult Google to learn more. Knowing the location of these nerves does help understanding why certain symptoms exist when these nerves are irritated.
There’s lots of info in the Newbies Guide Section- see the post Common symptoms & possible explanations, it explains the different nerves which can be affected as Isaiah has mentioned.
I didn’t have any of the swallowing or choking symptoms, but have had alot of facial pain- I had pain around my jaw, cheek, over my eyebrow & up on the top of my head- not the electric shock pain, but a constant aching & boring, sometimes like a freezer burn pain. (Amitriptyline helped me) I had numbness & tingling too- it’s not gone away completely after surgery but has improved. I had head & ear pressure too.
Have you had a CT done? It may be that some of your symptoms are vascular- a CT with contrast can show that.
If the Gabapentin isn’t helping there are other nerve pain meds which might help, & also Ben’s Friends has a Facial Pain group which has useful info.
Are you considering surgery?
I have most of the pains that you speak about. I had surgery for the left side in January of 2021. Dr. Delacure in NYC did the surgery. I had a much easier experience than what many have gone thru on this forum. I ate whatever I wanted after the surgery, was not on any meds for the surgery beyond tylenol and advil. Only did ice for first 2 days then switched to heat. I had 4cm styloid and the ligaments removed. Unfortunately now about 4 months out, I still have all of the pain. On Gabapentin and Clonazepam to take the edge off. Lyrica and Tegretol gave me terrible side effects. I am going next Friday to have nerve blocks done in NYC at the NYU Langone Center for Pain to see if the problem might be coming from something else.
So sorry to read that you’re still in pain & that surgery hasn’t helped. I hope that the nerve blocks help- let us know how you get on, thinking of you…
My symptoms are chronic sore throat, feeling like something is stuck in my throat, pain when I move my head left and right some times or stretch my neck up to pull something down from a high shelf some times. I was also told I had acid reflux and had an endoscopy with throat dilation which made my throat worse for several months. Finally my ENT ordered a CT scan with contrast and the radiologist and ENT diagnosed me with ES. I know what you mean about the ears feeling full like there is fluid in them. I have this as well as a sharp shooting pain around my ear sometimes. I guess that could be caused by ES as well but the doctor should be able to tell I hope. I will know more once I see a doctor that treats ES. Last week I had a manometry and 24 hour PH test at Cleveland Clinic in Weston, FL to rule out all acid reflux before I see the Eagle doctor because both my ENT and my new GI doctor believe I do not have acid reflux or LPR. I should have those results back next week. What was interesting is when I had to wean myself off the proton pump inhibitor to get ready for the two tests at Cleveland Clinic, it made no difference and nothing changed without the proton pump inhibitor. So I agree with both doctors that I have no acid reflux or LPR. I think this will be good information for the Eagle doctor to have. Good luck to you and I hope you find relief soon!
I’m so sorry to hear that nothing has really changed for you after your ES surgery. Here’s some “food for thought” - If you had bilateral ES, & one elongated styloid still remains, that could be what’s causing your current pain. My second styloid caused many more symptoms than the first one I had removed, & those got worse after my first styloid came out. It wasn’t until the second one was removed that I finally began to have relief from my ES symptoms. Symptoms can cross over from one side to the other i.e. symptoms being caused by your remaining styloid (if elongated) can affect the side where the styloid was removed.
Please let us know if the nerve block helps with your pain. I hope it does.
We’ve had quite a number of members who were misdiagnosed w/ GERD/acid reflux prior to their ES diagnoses. Almost all were put on Rx meds which didn’t help. It’s common for doctors to suspect that problem when a patient has a chronic sore throat where no other cause is found. When the diagnosis comes down to ES, an irritated vagus nerve is definitely a contributor to the throat & any gastrointestinal issues that are part of the symptoms.
For me my facial pain was really bad and after six months post op I hardly have any facial pain. I still have ear pain and tinnitus on my right side (where I had my surgery). I’m praying that my ear pain and the tinnitus will also go away.
I hope so, too, 70melvin6. It did take close to a year for some of my symptoms to resolve & beyond that for the worst of them, but those nerves keep working at healing as long as we live so you may notice positive changes even several years after surgery.
Thank you Isaiah for thinking of me. Still really struggling with bad tinnitus in both ears. This was never this bad before the surgery and I only had it in my right ear. Now I have tinnitus in ears 7/24. I also have hypothyroidism which has been out of whack for a while that might not be helping with the tinnitus. I’m going to see my endocrinologist next week and hopefully I can get this resolved.
Thank you all for your replies. Sorry for the late response. Does anyone have knots in their cheek? The side giving me the most problems is my left side. They said my left side is 4.5 cm and my right is 3 or 3.5. I’m supposed to be having surgery on the 19th of this month. I am trying to get in contact with my Dr. Before doing so because he mentioned doing the surgery internally, and I’d prefer externally. I just have heard that it is the better option. I’m worried he will not want to change his plans so late minute. I’m hoping this will resolve most of my problems. I actually had tooth and mouth pain as well. So much so that I had a perfectly good tooth pulled, and then I made them do a biopsy on my gums because I was worried about oral cancer. It’s unfortunate. I’m having dental pain on my right side now. I can’t even tell if it’s actually my tooth or if it’s eagles.
The trigeminal nerve is often irritated by ES & it runs across the upper jaw bone & lower gums as well as into your forehead above your eyes & into your nose. Tooth & mouth pain are common ES symptoms. Having a knot in your cheek could be the muscular response of jaw muscles innervated by the irritated trigeminal nerve.
Here is a picture of where the trigeminal nerve sits in your face. It may help you understand why you have some of the pain you do: