Undiagnosed but have symptoms

My story…April 2019 started with sore throat thought maybe post nasal drip…treated for allergies. Got a sinuse cat scan in may, sinuses clear. 2 months later in july requested head and neck scan everything came back clear…still have symptoms though full throat on right side, jaw pain in November requested a catscan of my jaw thought maybe tmd that also came back fine. Still have all the same symptoms now with tooth pain top and bottom and neck pain all on the right side. I even asked about es and all that was said was it wasnt mentioned on cat scan. I am 100% tired of feeling miserable every single day. I literally feel like I’m dying and no one us finding the problem…I have back right tongue pain and all the ent said was maybe its a nerve…well I mean shouldnt we check?? I have a daughter and a new bf and I’m just miserable with this all the time. Every so often I’ll go a week with 0 problems but then its back in full fierce for weeks…I live on my heating pad and ibuprofen…I’m at a loss

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Unfortunately because ES is rare, many radiologists are unaware of it, so don’t even look for it on a CT scan, unless specifically requested. You could ask for it to be looked at again, & ask for the styloid processes to be looked at for length, angle & width, plus also ask that the stylohyoid ligaments be checked for any calcification. You could also try & get a copy of the images & post them on here- we’re not doctors, but could see if you might have ES.
Dr Cognetti in Pa is very experienced, & does do phone consults, you could send the scans to him, other members have done this, or you could get an appt to see him in person.
It does sound as if you have nerve pain; there are medications which can help, like Gabapentin, Amitriptyline; there’s info in the Newbies Guide Section about that. You could see your PCP for that. ES can cause this, but there can be other reasons too.
Hope you get somewhere soon, it is tough fighting for a diagnosis & treatment.

My doctor has mentioned a nerve blocker or something but I worry if this isnt what it is that could just prolong the process of finding out what it could be…I’m a mess 🤦

You make a good point, Sara. Blocking the pain is just a bandaid. Finding the cause of the pain will be more likely to produce a permanent fix. I agree w/ what Jules said about having the CT scan re-read w/ an eye to looking for elongated styloid processes & calcified stylohyoid ligaments. If your scan covered the area from skull base to hyoid bone, these structures will be visible (ligaments are only visible if calcified). I also agree that sending your scans to Dr. Cognetti or perhaps Dr. Newman who’s in the same area & getting an opinion from one or both of them would be a good idea.

Your jaw & tooth pain is likely being caused by the trigeminal nerve, neck pain can be vagus or accessory nerve, and tongue pain will most likely come from the hypoglossal or glossopharyngeal nerve. These are all nerves that can become irritated by ES. Check out Two Minute Neuroscience on YouTube. There is a short video for each of the nerves I just mentioned which shows where the nerve is & describes its function & symptoms when it’s irritated. This will be good information for you to arm yourself with. There are also links in the Newbies Guide to published scientific articles which will back up this information.

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So my doctor is finally gonna check for eagles syndrome :open_hands: to either rule it out or finally see if that’s the issue!

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HOORAY! Glad you continued to advocate for yourself. This is great news!

Hi Sara, This sounds like a very positive direction for your doctor to be moving. As you may have noticed from other people’s posts, sometimes one doctor is unfortunately not enough to do the trick… Keep on advocating for yourself!

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I’m just hoping to get fixed and feel myself again.


So its a c-spine xray…will that work??

Hi Sara,

You need a CT scan of the area of your neck from your hyoid bone to your skull base. A C-spine x-ray may or may not show your styloid processes. The CT scan I recommended will show them & will also show if you have any calcification of your stylohyoid ligaments which is also a part of ES. After you get your CT scan, it would be good for you to try to get an appointment with Dr. Newman or Dr. Cognetti who are both in your state & are excellent ES doctors. You can find their contact info on our US Doctors List.

Would a 3D ct scan starting at C2-T1 show the styloid area

No, unless they’re very long, you need it from skull base.

Would one of te jaw work? I had a ct scan of my jaw back in November? And a head nd neck one from July?

They might between them show the styloid processes & any calcification of the stylohyoid ligaments- but they’d have to be evaluated for ES.