Hi kristictr,
The type of scan you need to diagnose ES is a regular CT scan generally w/o contrast unless you have vascular symptoms (cranial hypertension, migraines & the like). Any radiology tech can do the scan. It should be taken of the area from the hyoid bone & skull base.
Good call on the cranial nerves you think might be affected. I would agree based on your symptoms. Six of the twelve cranial nerves run through the area where the styloids are & the varied symptoms caused by ES come from irritation of one or more of those nerves by the elongated styloid &/or calcified stylohyoid ligament (which also can cause ES symptoms). The six nerves in question are #5 Trigeminal (very commonly affected), #7 Facial (commonly affected), #9 Glossopharyngeal (commonly affected), #10 Vagus (very commonly affected & causes quite a diverse set of symptoms because of the size & length of this nerve), #11 Accessory (less commonly affected but not uncommon), #12 Hypoglossal (commonly affected).
Your neurologist if flat out wrong that you must have pain at the back of your head to be diagnosed w/ ES. Some doctors also believe that if you lack throat pain or the styloids can’t be palpated in the throat that ES is not the diagnosis. They are also usually wrong. The styloids often can’t be felt & some people don’t get a sore throat w/ ES even though that’s a very common symptom.
The styloids can break from something as simple as laughing hard or coughing. That little “loose” piece in your neck could absolutely be wreaking havoc w/ the nerves in that area. Additionally, though you don’t feel specific symptoms on the side w/ the elongated styloid, it could be contributing to the symptoms you are having. We do see “crossover” pain in ES where symptoms on one side are being caused by an elongated styloid on the other side. Also, in bilateral cases, once one styloid is removed, the remaining styloid can become very symptomatic leading one to believe the initial surgery was a failure when it was a great success.
Though TX is a huge state, our members from there have had a tough time finding a good ES doctor there. Many have chosen to travel to see more experienced ES doctors out of state. You’re in between two of those - Dr. Milligan in Phoenix, AZ, & Dr. Ness in Baton Rouge, AL. Several members have also traveled to San Jose, CA to see Dr. Samji who is likely the most experienced ES surgeon on our doctors’ list.
We generally prefer external surgery over intraoral as it allows better access to the styloid process so it can be removed at the skull base & not just shortened. Nerves & vascular tissues can be monitored during external surgery. It also provides access to the stylohyoid ligament should it need removal as well. Intraoral surgery is a little trickier when it comes to complete removal of the styloid & s-h ligament & has a higher post op infection rate but it does have its advantages.
Here’s the link to our US ES Doctors’ List:
https://forum.livingwitheagle.org/t/us-doctors-familiar-with-es-2019/4752
I know this is a lot of information, but I hope it gives you some guidance you’re seeking.