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Eagle Syndrome - Online Support Group

Diagnosis

I’m new here thanks for accepting me. Not sure if I’m posting in the right place ! Still navigating the site. Like many people I am still on a journey to diagnosis. So lots on consultant specialities and lots of ££££ spent I am still not sure what’s wrong with me. I have been off work over 9 months missed birthdays weddings Christmas and 4 holidays. I did not believe my body could tolerate so much pain. Symptoms are all pretty much left side of body and follow the recognised list posted somewhere on here. Going over my scans I had when my dentist thought it was TMJ I noticed on the report in small print that I have elongated calcified styloid ligaments. This is what led me to this site. What is the best scan to give an accurate diagnosis of Eagles Syndrome. If it CT should it be with contrast or without. Not sure if blood vessels are involved but I have been to A & E a couple of times with chest pain and fast heart rate. I am in North Wales UK.

Hi Caz1!

Welcome to this wonderful forum! So glad you found us!! Bilateral calcified styhohyoid ligaments is one of the definitions of ES so you do belong here if you’ve seen that as a note on one of your scans.

Yes, a CT scan is the best for definitively diagnosing ES. It can be done w/ or w/o contrast. Contrast will show soft tissues such as blood vessels & in some cases the internal carotid arteries &/or jugular veins can get compressed in a person w/ ES when the head is in certain positions. If there is no concern about vascular compression then a regular CT w/o contrast is sufficient. You want the area between the skull base & hyoid bone to get scanned.

Your chest pain & elevated heart rate might be coming from vagus nerve irritation. The vagus nerve is one of our cranial nerves, & it helps control many functions in our bodies including heart rate, blood pressure, body temp, gastrointestinal issues, vocal cords, anxiety levels…It is one of the cranial nerves which is often affected by ES & creates a lot of the crazy symptoms that seem unrelated & thus make ES hard to diagnose.

Mr. Axon in Cambridge, England is probably the most experienced ES doctor in the UK, but I believe there are other members on this forum from Wales who have had successful ES surgeries closer to home. If you click on the gray magnifying glass in the upper right & type Wales in the search box the opens, posts by people from Wales will come up. You can read those, & you can privately email any member from Wales by clicking on his/her screen name as it appears above his/her post. That will open a window that allows you to write a private email.

Here is the link to the doctors list for outside of the US:

Did you have a CT before for the TMJD? Or was it a panoramic x-ray? If you’ve got calcified ligaments then that should be enough, regardless of what scan you’ve had, just thinking of the extra radiation you’d be exposed to…I don’t know about Mr Cellan Thomas in Cardiff, but I do know Mr Axon likes to get his own CTs done his own way, so it might be not worth getting another scan done just yet…the report should be enough for a referral I would’ve thought. And might save you some time as well?

Hi Jules

I’m the other end of Wales are there any surgeons in Liverpool or Manchester please ?

On the list we have Dr Mike Rothera, Salford hospital, Greater Manchester- we don’t know if he’s done many surgeries, but he did diagnose someone- the story was covered in the Daily Mail, if you google ‘father googled symptoms, rare throat symptom’; there’s a link in the Doctors list in the Doctors Info section. There’s also a Dr Ken McAllister at Blackburn Royal Infirmary on the list. Are you able to get treatment in England from Wales, I thought it was tricky to get funding?