I went to the ER in April 2024 for a stabbing pain on one side of my throat that prompted intense coughing that left me breathless and seeing stars. I had three of these episodes in 24 hours and ran to the ER where I felt like I was laughed out of the room because I told them I smoke marijuana regularly and I have NEVER- in 15 years of smoking ever experienced a coughing fit like that. (Pain/coughing fits were not induced by smoking) I expressed how terrified I was that I was going to have one of those fits while driving with my young son and the doctor asked me “so what do you want me to do?” She said my throat didn’t show any signs of irritation and she couldn’t see or feel anything out of the ordinary. I was referred to their ENT department and when they contacted over 8 weeks later I hadn’t had any more issues so I declined to schedule at that time (July 2024).
Fast forward to November 2024 and the stabbing pain is back with a vengeance. I still can’t pinpoint what triggers the pain exactly outside of swallowing- but it’s not all the time. Raising or changing the inflection of my voice starts to trigger the pain which triggers the coughing fits which I am now gagging and drooling on myself by the end of- gross, embarrassing and terribly frightening for anyone that has to witness it.
I call patient services where I had the original referral for ENT and spoke with an angel of a woman that connected me with ENT and I was able to get something scheduled the following week. At that appointment I spiral out of control on the poor doctor about how I feel like I’m taking crazy pills because the pain isn’t constant but when it’s there- I’m debilitated. She instantly started talking about Eagle Syndrome and I had no idea what she was talking about. She did an Endoscopy to verify she didn’t see anything else that could be causing the pain and concluded with referring me for a CT to confirm elongated styloids and speech therapy to try to help with the coughing fits- she thinks my vocal cords may be spasming from the pain and it’s restricting air flow.
I had my CT December 2nd and went over the results with her December 3rd where she confirmed one styloid is 5mm and the other is 4mm and she believes this is the cause of my pain and surgery is necessary for relief. She said she could probably schedule me for the surgery in January which sounds amazing to get seen that fast but now that I’m here (in this group and with a little time to think) I don’t feel nearly as confident having just anyone do this procedure and am looking into a more experienced person to do the surgery. I was able to compile a list of Doctors to start with from this group
After doing some reading on other cases I believe I have had the following symptoms for years but never thought they were related:
-recurring stiff neck (10+ times a year)
-migraines (always blamed it on alcohol/stress)
-shoulder/arm pain- feeling like pinched nerves
-arm/hand numbness
-Head/face sensitivity
-light sensitivity
I am currently trying to manage the anxiety I have around eating, drinking and sleeping (snoring) because I believe these are triggering the pain.
I am so happy I found this group- it already feels less lonely in my ES diagnosis.
Sorry you are getting these debilitating symptoms. It’s good though that the doctor seemed to know about Eagles syndrome and you can hopefully get the surgery done and feel improvement early next year.
Hi SyndiMac, glad that Dr got it figured out quick! If you are able to travel CA has some great ES doctors, like Samji, Damrose, Osbourne. You could also ask this ENT how many surgeries she has done, her technique, her success rate, how much does she remove, etc. There is a good list of questions somewhere on this site, @Jules would you link it please?
The coughing fits sound awful, poor you, especially with a little one to take care of…
In the Newbies Guide Section, there’s info about surgery, and as @Andy89316 mentioned, there’s a list of questions in there which you could ask your doctor to see if you feel comfortable with her doing the surgery: ES Information- Treatment: Surgery - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
It may be that she’s done quite a few surgeries and is competent, but definitely a good idea to check that out and if not see one of the others on the list- it’s impressive that she was aware of ES & could diagnose you, some members have tried dozens of out doctors and taken years to get ES confirmed!
Let us know how you get on
Thank you! Yes-I have a lot of research ahead of me to figure out the best route to surgery for me and I’m intrigued the doctor picked up on ES so quickly after seeing how many struggle for years!
Thank you! Yes she seems very competent but also very, very young. I’m 35 and she appears younger than me (yes I’m being judgy) and I think I want someone with experience in this surgery.
But, I have been wrong before and have a list of questions for her that could lead to a completely different outcome after speaking with her.
I would find someone who does external removal of the styloid routinely. I used Dr. Hackman at University of North Carolina because he is the only surgeon in the USA that does both styloids simultaneously. Since one has to travel and jump through a bunch of insurance hoops to get the surgery in the first place, I didn’t want to do through it twice.
I had surgery in July 2024. I am recovering well. I do have one spasmodic area when I swallow but it is getting much less frequent and less severe. My headaches are much improved, the severe face pain and scalp pain and ear pain has left! Recovery was not exceedingly painful, but I did have to sleep sitting up for 30 days. On a wedge in bed, not sitting in a chair.
@SyndiMac - One thing to bear in mind regarding our Doctors List is that it’s not comprehensive. We know there are doctors whose names are missing from our list merely because none of our members have gone to them so we haven’t been introduced to them yet. It may be that your diagnosing surgeon is among those. We add names as we learn of doctors who have done successful ES surgeries & who understand the complexities of ES. I added a doctor to our list yesterday who’s in Sacramento. He isn’t super experienced with ES surgeries yet, but he doesn’t downplay any symptom a patient has once diagnosed w/ ES. We need more doctors like him on our Doctors List as even some of the experienced surgeons will say certain symptoms couldn’t possibly be related to ES yet those very symptoms go away after the styloid(s) is/are removed.
Hi! Welcome to the group. My pain was activated by movement or combo of movement. Massage with my face in a face cradle, talking with my head turned, visit to the dentist with mouth open and head turned, lifting a suit case over my head and even a hug where someone taller than me put pressure on my shoulders. Keeping a diary helped me understand what was causing the styliod to come into contact with structures in my throat. Inflammation would then take over……oral steroids got me through the worse episodes but muscle relaxants and migraine meds help with head pain. Going to a very experienced doctor is important, external surgery they can see more so I think it is safer….i had both removed separate times and doing well after years of sever pain……wishing you well!
Hey Ann! I’ve spent the last few days trying to really focus on the things that are triggering the pain and can agree that I need to start writing it down. I’ve resorted to drinking out of straws and keeping my head pointed strait when drinking and it’s really helped with the stabbing throat pain.
I’m meeting with the ENT that diagnosed me to go over questions I have for her but she did say she has performed the surgery before. She even said there is a more experienced surgeon at OHSU she can refer me to if that’s what I choose after meeting with her.
Appreciate your input, Ann! thank you!
@harrisonboy - I’m sorry you’re continuing to be moving in the wrong direction. I am praying for you to find the right doctor to diagnose what’s causing your current symptoms & who can also take steps to help you recover from them.
Mayo Clinics throughout the US have been useless in helping our members over the years. It’s hugely disappointing that such a well established medical institution with very highly rated doctors is so ignorant of a problem that is getting more & more press & thus coming more to the forefront thanks to the likes of this forum, the Facebook forum & possibly others I’m unaware of. I hope the doctors in the Mayo Clinics throughout the US “get in the game” re: ES very soon!
Am I the only one who has become so much worse after the surgery?
I am not exaggerating, I dont know how I am going to make it much longer. Ive been to the hospital, GP and no one will do anything.
I finally spoke to hepworth’s office today. He was supposed to schedule me back in december for followup, call in some tests for me and medications. They said it will be March before he can speak to me on the phone. No tests or meds ever happened, no followup visit in December as promised.
Some members have felt worse initially, but then do improve once the initial swelling has gone down…we are seeing more members with very complicated medical issues though, and that takes longer to see improvements, plus the surgery often isn’t the only treatment needed, ES surgery is often just one in a bunch of treatments needed…
My heart is breaking for you & your situation, @harrisonboy especially in light of the way Dr. Hepworth & his office have neglected your situation. I hope you’re able to call again & advocate aggressively for your need to speak to him ASAP not in March.
