So the past year has been one of the most difficult years of my life. I went to see my dentist she proceeded to yank and yank a crown off for over 45 min. I left and no longer could swallow correctly. For almost a year I felt like someone was strangling me had a popping noise coming from my hyoid bone and then one side of my jaw was very swollen. Finally a dr seen my hyoid bone was pushing up into my throat which was pushing on the back of my vertebrae. I had seen so may drs and was grateful they found this. I had the surgery which they cut off 2cm of the bone and could finally swallow. A month later when the swelling came down, I started feeling this stabbing pain under my ears in the back in the grove. It would shoot down to the top of my hyoid bone and felt like something was stuck and moving around when I would move my head. Both sides started doing this so again in constant pain from the stabbing behind the ears then pain in the ears, hearing would go in and out, I’m having severe migraines now and something feels like it’s stuck in my throat where my tonsils are and it hurts to swallow. Some days I choke on food. My neck is pretty stiff and pops and click randomly from the back of it and I have some facial pain in the tmj area but nothing compared to the ear, throat, and head pain. This is 24/7 the headaches are unbearable. Everything is worse when I move eat or talk so by the end of the day I can’t handle it. I went to see my dr who did the surgery and he looked at my scan and said he doesn’t see any elongation but my symptoms all sound like ES. Wants me to see a neurologist and ear specialist before he does anything. I’m going next week but in the mean time my ent ( who is actually listed on the drs on here that do surgeries) I went to see and he looked at this new scan that my surgeon said had no elongation and compared it to a old scan from August and said he could see elongation and calcification. I’m so confused how could this scan now not show anything but the old scan does when I wasn’t even having these symptoms at that time just the hyoid bone symptoms. He said I should have surgery. Idk what to do I feel so conflicted but with each day the symptoms get worse. It’s almost depressing anymore that I can’t function like I used to and depend on a few medications around the clock. The surgeon that did my hyoid bone is a cancer Dr my ent who is very well known and has been doing this for years found this he said. I just don’t understand how a cancer surgeon wouldn’t see this? Do any of my symptoms seem like ES? Does anyone on here have severe migraines and stabbing pain behind the ears where the ear meets the jaw and tonsil pain?
Hi ShelbyH. I for sure have that terrible pain behind the ears too, near the top of my worst symptoms actually. The random neck pops too, granted, decreased since L side removal on 11/11/24. R side in about 3 weeks. The only thing I might offer about the cancer dr not noticing elongation is that many doctors are familiar with ES, and elongation definitions can vary. Everyone has styloids, the average is 2.5 cm, but some Drs will say elongation starts at 4 cm or 5 cm. But its all sort of irrelevant because angle and thickness matter too and can cause symptoms. There are plenty of examples of that on this forum. I wouldn’t worry about it too much. The something stuck in throat and painful swallow are very common ES symptoms.
Work with the Drs that have experience with ES, get multiple opinions from other ES drs if you want, and just gather information for a while. Then you can decide what to do. Are you able to post your imaging?
I’m not able to post right now. The ent Dr did say he did not notice and thickness on the styloids but did notice calcification and said they were larger than 3 so are considered elongated. Again not sure why he could see it on my scans from summer but not now? Especially when I was having symptoms from the hyoid bone not this. My cancer Dr did say they always make any patient who may have this get a few opinion’s from a neurologist and ear specialist then proceed with surgery but I know that’s gonna take a lot more time and again this is so painful everyday it gets worse and worse. I just can’t function anymore without taking all these pain meds and I also can’t leave the house cause I can’t drive on them. Another weird symptom I noticed is sensitive teeth lately to anything cold. I also have this weird twitching in my eye so I don’t know what those are about but this all seems so complicated anymore.
@ShelbyH - Welcome to our forum. I’m so sorry that you’ve already been through hyoid bone surgery & now have ES symptoms. It’s not a fun prospect having to consider another round of surgeries. Do you mind sharing who the doctor is who diagnosed you with elongated styloids? Most of the ENT surgeons on our list are also cancer specialists who operate in the throat & neck that’s why ES surgeries are in keeping with what they already do.
I agree w/ everything @Andy89316 told you & will add that there are cranial nerves in your neck that share space with the styloids & stylohyoid ligaments. When the styloids elongate as yours have, they tend to irritate some of those nerves. Based on your symptoms, the nerves that are most likely being bothered by your styloids are the glossopharyngeal (GPN) & maybe vagus which both can cause throat pain. The GPN &/or the trigeminal nerve can cause the sharp pain under your ear & trigeminal can cause pain in your teeth. The eye twitch is coming from your facial nerve which is another of the nerves often irritated by elongated styloids.
I can’t speculate on why your styloids don’t appear elongated in your most recent scan but your symptoms suggest they are. Being able to see your previous scan & your current one so we can compare would be helpful, but I understand you can’t post them at this time.
Here are images of the trigeminal, facial, glossopharyngeal, & vagus nerves so you can see where they are & understand why you have symptoms where you do.
Trigeminal Nerve
Facial Nerve
Glossopharyngeal Nerve
Vagus Nerve
Thank you for this post. The headaches I’m getting are behind the ear on the sides of my head and they are the worst I have ever had. Pretty much constant as I can’t lay on my sides at night and if I don’t take the migraine meds it’s beyond horrible. Problem with the meds is that they make me fall asleep and with having four children that is hard sometimes. It’s Dr. Ramirez out of St.John’s. I know he’s very knowledgeable and has been doing this for a long time. I’m still not understanding why my scan looks the way it looks now and was showing this before. Do you know if there is any type of nerve medicine that can help for this in the meantime?
There are quite a few nerve pain meds which can help; Gabapentin, pregabalin, Amitriptyline & Carbamazepine are the most common ones used. They can take a little while to build up enough in your system to help, sometimes you might need to try a couple before you find the one which works for you, or take two…Some members have used lidocaine gel or patches to help as well. There’s info in this section:
ES Information- Treatment: Pain Relief - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
Without seeing your CT images we can’t say why it shows on one scan and not another, unless it’s down to the person reading them & their interpretation? Not all doctors understand ES & how the size, thickness and angle of the styloids can cause symptoms. We often see radiologists reporting everything as normal when often they’re not.
Good to know I’m gonna ask my dr about nerve meds. I agree with you on the radiologist reportings as all of them have come back normal because they don’t know what they are looking for.
I’m now noticing I’m getting small tonsil stones come out and never in my life has this happened. Just wondering if anyone else has had this?
Yes, it does seem to be common, lots of members have mentioned having them, although I never did…
I never heard this before. They are pretty small and I’ve only had a couple but never prior to this. Does anyone know why this happens?
Some members have issues with calcifications in different places, hypercalcaemia, (metabolic disorder is a possible cause of ES) and issues with the parathyroid gland which helps with calcium regulation, although if you look online for causes of tonsil stones, it doesn’t mention those as being a cause!
Anyone else having a choking problem I will feel like I can’t get the food down and clear my throat and a little food comes up. My dr said he can’t explain why that’s happening. I’m just nervous and wanted to know if this has happened to anyone else? Thanks again for all your help.
@ShelbyH - Yes! Choking is a pretty common ES symptom. We’ve had several people recently mention not being able to swallow, choking & gagging as their worst symptoms. It’s either related to irritated nerves or the styloid actually pressing into the throat that can cause that.
If you go back & look at the images of the nerves I sent you in my earlier post, you can see a few branches off cranial nerves that could be affecting your ability to swallow. When nerves get irritated or damaged they can cause pain, paralysis, numbness, or incorrect response to an area they innervate. In your case, it may be one or more of the nerves related to swallowing (trigeminal, facial, glossopharyngeal, vagus & hypoglossal) is making your throat contract rather than open when you swallow. Getting the pressure off the nerve should help it recover & that symptom should stop. Have you considered getting a second opinion regarding your styloids? Dr. Cognetti in Philadelphia does telehealth consults so you wouldn’t need to travel to see him. You would need send him your CT scans though.
•Dr David Cognetti, Thomas Jefferson University Hospital, Philadelphia 215- 955- 6760 (Has done many successful surgeries on members). Only removes ligaments if calcified. David M Cognetti MD | Jefferson Health