Hi Jack & welcome to our forum!
I am sorry for what you’ve gone through for all these years. Your symptoms definitely sound like vascular ES, & w/ the facial paralysis, it sounds like your internal carotid artery on the left side is being compressed by your styloid &/or you have a calcified stylohyoid ligament on that side that is causing the trouble. You’ll need to request a CT scan w/ contrast to evaluate for ES & vascular compression (scan should cover the area between your skull base & hyoid bone). The vascular compression may not show up w/ your head in neutral position (face toward the ceiling) so ask your doctor to please request some images w/ your head turned to the left as that is what makes you most symptomatic. You cannot ask for this at the time of your CT as the radiology tech is constrained to follow doctors orders & if he hasn’t ordered it w/ your head turned, it’ll be a no go at your request.
When you have your appointment, it’s very important to ask these questions:
Are you familiar with Eagle Syndrome? If so, have you done ES surgery? If the answer is yes, go on to the bullet point questions below. If the answer is no, please ask for a referral to someone who is familiar with ES, or take a look at our doctors list & see if there’s someone on it who’s relatively close to you. If there isn’t anyone close by, and traveling is an option for you, we can make recommendations for the most experienced doctors who are closest you.
• How many ES surgeries has the doctor/surgeon done?
• Which surgical approach will be used i.e. intraoral or external?
• How much styloid will be removed (removal as close to the skull base as possible is the best answer) & will calcified stylohyoid &/or stylomandibular ligaments be taken out or left in place (yes is the best answer)?
• Does the surgeon do bilateral surgery (i.e. both sides at once) or unilateral surgery (each side requires a separate surgery bilateral cases). (Most docs don’t do bilateral surgery)
• Will a hospital stay be required or will surgery be done outpatient?
• In the doctor’s experience, what percent of symptoms relief has (s)he seen from surgery? (50-80% is the norm but some people get almost complete recovery)
• What is the expected recovery time? (Some doctors say two weeks. This is unreasonable. Two months up to a year for nerve recovery is more normal).
I hope this helps.
https://forum.livingwitheagle.org/t/doctor-lists-no-discussion/10245/5