Poor you, it’s rotten having to wait so long & then only to be dismissed, did your doctor say why he felt you didn’t have ES?..the definition of ES is elongated styloid processes &/or calcified stylohyoid ligaments which cause symptoms. So as your styloids are longer than average & you have symptoms it should be straight forward to diagnose ES. Your main symptoms sound like it could well be Trigeminal Nerve pain; there are other causes for that, not just ES. Did your doctor mention prescribing any nerve pain medications for this? There are some which could help like Gabapentin, Lyrica, Amitriptyline, Carbamazepine, so might be worth trying, not sure of your healthcare system, whether you have a GP/ PCP who could prescribe them? Ben’s Friends also have a Facial pain group which you could either join or just have a look at for more info, here’s a link:
Living With Facial Pain - Support Community for Facial Pain Diseases - Trigeminal Neuralgia (TN) and Glossopharyngeal Neuralgia (GPN)
It might be worth investigating TN a bit more, depending on what other ES symptoms you have- here’s a link to the Common Symptoms discussion if you’ve not seen it:
ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
If you don’t have any other ES symptoms then maybe a referral to a Neurologist might be an idea to look into this further, although presumably nothing showed on your MRI?
If you do have other ES symptoms then it might be an idea to see if you could be referred to someone else- although we only know of 2 doctors with ES experience in Norway & I’m guessing you’ve seen one of those? There is a section about patient advocacy on here, there might be some helpful info about how you can push for another appointment. Is there any way you can get a second opinion?
So frustrating for you, I hope that you can get some treatment!
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