Welcome to our forum & thank you for sharing your symptoms & how your diagnostic (or lack thereof) journey has gone so far.
All the symptoms you’ve mentioned are those we see w/ ES, though you mentioned the MF specialist mumbled “hyoid”. Hyoid Bone Syndrome has very similar symptoms to ES & we do have some members who have both. That said, because you can feel the “bone” in your throat behind your tonsils, it’s most likely the styloid you’re feeling.
I had many of the symptoms you’re describing & can tell you they are caused by irritation to some of the cranial nerves. Our other moderator, @Jules, wrote some excellent posts which thoroughly describe the symptoms of ES & their potential causes. I think you’ll find these posts very helpful. Please keep pursuing getting the CT scan as that will be your best ally toward a proper diagnosis when it’s in the hands of a doctor who has ES experience.
https://forum.livingwitheagle.org/t/es-information-ba
ckground-anatomy-styloid-length-angulation-classic-and-vascular/1391