Diagnosis

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:
https://forum.livingwitheagle.org/t/doctors-familiar-with-es-countries-outside-us/4753