Hi all! Like most of you, I’ve had very odd symptoms for years: facial pain, facial spasms, throat pain, tinnitus, headaches, neck pain, anxiety, etc for years that’s gotten worse over time. I’ve seen a lot of different specialists with no answers. I came across Eagle Syndrome and it sounds like it could explain a lot.
I don’t have any X-rays or CT scans to go on, so I perused TMJ and brain MRIs from a few years ago and found what looks like elongated styloids to me? Curious your thoughts.
Your symptoms do sound consistent with ES, but not sure about the imaging, it could well be styloids there! Are you able to get referred for a CT? That would be the best next step?
@Jules I was hoping to find some evidence on imaging I already have before asking for a CT scan. Doctors have been a bit hostile with me in the past if I suggest something before they do, accusing me of trying to be “Dr. Google” and whatnot.
Really hard to tell on mri. CT scan with contrast is best. Happen to have any dental xrays or neck xrays?
@klizaus - Unfortunately, there are too many doctors who don’t know a thing about ES or are dismissive because “it’s so rare…you wouldn’t have that!” so self advocating is necessary & putting up w/ their hostility. If you can afford it, your best bet would be to get a consult w/ Dr. Osborne in Los Angeles. He charges $250 for an initial consult (not billable to insurance). He does phone consults so you wouldn’t necessarily need to go to his office to get an opinion. You could share your MRIs w/ him & he can order a diagnostic CT scan for further clarification. He’s one of the most experienced ES doctors on our Doctors List & won’t treat you with derision for suggesting what you think is the source of your symptoms.
What you have circled in your imaging looks very much like elongated styloids to me so I think you have a good case to argue.
•Dr. Ryan Osborne - Los Angeles ENT Doctors ENT Specialists Surgeons Cedars Sinai Medical
@TML I did have a CT done by a dentist in 2020, but the image files were messed up so the files can’t be opened. I’ll see if I can get my boyfriend in IT to figure that out.
@Isaiah_40_31 Thank you! I found him online a while ago and assumed his consult fee would have been much more expensive so this is good to know.
