Good morning. I haven’t posted here in quite a long time. Just to give you a little background, I was diagnosed with eagle’s syndrome in 2009 and went on to have a “partial” styloidectomy the same year. I consider it a complete failure, as none of my symptoms went away. Fast forward to 2021: I saw an ENT last year and he thinks I have glossopharyngeal neuralgia and/or carotidynia. He has referred me to a neurologist. My question is, have any of you also been diagnosed with glossopharyngeal neuralgia and/or other neuralgias of the throat or face? Did your surgery for Eagle’s help at all? What meds have you tried successfully for the neuralgias? Honestly, the burning pain in my throat and tongue is constant and is causing me so much anxiety. I’m also having voice and swallowing problems. Can Eagle’s syndrome associated with vascular compressions cause these symptoms as well? Looking forward to hearing about your experiences!
Thank you so much!
Such a shame that your surgery wasn’t enough to take away any symptoms, & that you’ve still had pain since, that’s a very long time…
ES is listed as a possible cause of GPN, so yes, it could be possibly be caused by styloids. Quite a few of us here have had Trigeminal Neuralgia too, as the TN exits the skull base close to your styloids too, as does the facial nerve, so that can cause facial pain too. ES can also compress the Vagus nerve, which can cause anxiety, digestion issues, and cardiac arrhythmias for example. Have you had a scan with contrast, do you know if you have vascular ES? If it is the styloid causing the carotidynia, then that pain won’t go away…
I had TN, it is helped with Amitriptyline, 20mg. Before surgery it was getting worse, & I was getting numbness & tingling over my face & jaw, but this went away after surgery, I’m left with the Type 2 facial pain now, aching in the jaw, teeth & over my eyebrow, but it’s much better than it was. There are other nerve pain meds which might help though, like Gabapentin, Carbamazepine…
There’s info about which nerves can be compressed by the styloids & what symptoms they cause in the Newbies Guide Section:
ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
And info about pain relief here:
ES Information- Treatment: Pain Relief - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
Scroll up to the top of the discussions for the info as the links take you to the last post I think.
Hopefully others will chip in with their experiences & other options rather than medication.
Are you thinking about trying to get revision surgery?
I am also sorry for your long term pain & symptoms. Jules has given you great information & pretty thorough advice. My only addtions are - getting the styloid(s) removed back as close to the skull base as possible is what seems to give the best results in eliminating or reducing ES symptoms of all types. If you only had your styloid shortened (partial styloidectomy) then it’s likely the remainder is long enough it still irritating your nerves & causing your symptoms. Having revision surgery to remove what remains & looking at your other styloid to see if it could be causing problems as well, would be a good idea.
The styloid can compress either the internal carotid artery (can give stroke or TIA type symptoms) or the internal jugular vein (migraines & intracranial hypertension, etc). In my opinion, the ICA compression is slightly more dangerous because of the slight risk of inducing a stroke, but both cause very miserable symptoms.
Try to get an updated CT scan w/ contrast as Jules suggested. That will help you & your doctor to have a better idea of what’s going on with your styloids.
Im not sure what “partial” means? How long with they and how much did they take out. Mine were taken to skull base and part of the surgery included decompression of the glossopharyngeal nerve. Its possible they didnt take it off far enough and/or decompress this nerve. It sure seems like the tongue issues wold be related to this nerve.
As others have suggested, get updated scans. I also suggest seeking out an ENT that has alot of experience in ES surgeries and willing to do revision surgery. They would likely do a more thorough evaluation to determine what might be the source of the continued symptoms.