I dont know where to go from here😢

Hi everyone! I’m a newbie to the group. I’ve been pretty quiet on here, just soaking in all the information & knowledge. A little back story on me…April 2022, i woke up with jaw & ear pressure & pain. Urgent care prescribed antibiotics twice-did nothing. Pain & pressure increased, became debilitating esp on left side. Went to reg chiro-did nothing. Botox masseter thinking maybe tmj-did nothing. Mid-March, upper cervical chiro 2nd appt-symptoms vanish & thought i was cured. Boy, was i wrong!?! End of Sept 2022 while at work, pain & pressure comes back with a vengance. Next day, symptoms vanish. A week later after core workout& cardio, intense burning in upper body(traps,shoulder). By the end of that day, all head & neck symptoms return& then some. Since then ive been seen by countless doctors, dentists, specialists, chiros, physical therapist, massage therapist, acupuncturist. Ive had all sorts of imaging done(dont know if anyone has even looked at my styloids tho). Been put on a long list of medications which i dont like! I have since stopped working due to this & most days are spent laying down in bed cuz it decreases some symptoms a little bit. As of today, my symptoms are very different from one side to the other. Pressure & pain is much worse on left side. Temple, ear, facial, neck, throat, trap/shoulder, even arm. Pain when swallowing, actually when eating & drinking there is something popping on RIGHT side of throat/neck. It can actually be felt. I guess, I say all of this to ask for some guidance. I feel so alone. Ive lost everything to my condition. Im devastated &frustrated. Does this sound like Eagle or Ernest syndrome & exactly what professional should i see to get the correct imaging done to rule in or out Eagle/ Ernest? If u’ve read to this point, i appreciate u beyond words & u are a beautiful, caring soul!:two_hearts:

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Hi!
It’s not unusual for symptoms to come & go for no apparent reason, and also to get symptoms differ from each side…there’s info about common symptoms & possible explanations in this post:
ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
Sounds like the left side is typical nerve involvement for ES- the Trigeminal, Facial, Glossopharyngeal & Accessory nerves. The popping on the right side could possibly be a calcified stylo-hyoid ligament .
The best thing to get a diagnosis would be to get a CT of your head & neck, from the skull base down to the hyoid bone, and ask that this could be evaluated for ES or Ernest Syndrome. Any calcifications should show on this and then you’d be able to see if this is your issue. You’d need to be referred to an ENT, or a head & neck cancer or neuro surgeon, we suggest that you try to get a referral to a doctor with experience of ES. There are a few in your state, here’s a link to the doctors list:
Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
If you’ve already had a CT done of this area then try to get a copy of it, & you can compare it to images of elongated styloids & calcified ligaments, or upload it here & we can have a quick look to see if you’re on the right track.
Hope this helps!

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Thank you so much for ur response & ur advice!Sorry i was kinda down& sad this morning when typing it out. Mornings can be rough! I’ll keep u posted what the doc says & what the CT shows. Im 15mins outside of Cleveland, Ohio so i got CCF close by & OSUWexner a couple hrs away. Ur list of docs is a godsend!!

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Welcome to our site, @For3v3r3v3 . I would recommend you see Dr. Old as he has a great track record in helping our members in your state w/ ES. Some of the other doctors have not been as consistent. I’m sorry though that he’s not as close to you.

Getting at least 2 opinions is worthwhile & often doctors that are a distance away will do a virtual initial consult (for a fee) so you don’t have to travel there. Once you have the CT scan in hand (make sure you come away w/ your own hard copies on CD), any doctor you consult will want a copy of your CT scan & the radiology report.

I want to emphasize that you need to make sure the CT is evaluating your styloids, stylohyoid ligaments, stylomandibular ligaments & hyoid bone to look for ES, Ernest Syndrome or Hyoid Bone Syndrome.

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