Hi and sorry to hear about your symptoms.
Would you be able to post images of some of your scans here (most preferably the CT scan. Perhaps one of the members may be able to see something that the radiologist missed (as these are rare syndromes).
On reading your note, I was thinking you may have clicking larynx syndrome or HBS, but I am not a medical professional, so my opinion counts for nothing.
However, depending on where you are, you should try and get an appointment with one of the doctors listed on this page:
It has a list of doctors listed by area that are familiar with ES, and some will know about hbs and cls (but another member of the group may need to help you on this to point you in the best direction). Recently, I have seen some people on this forum who had hyoid issues in the US go to a doctor called Dr Dewan.