Hi ringpockets,
First, I’m sorry you’ve been diagnosed w/ ES but am glad you found us. You’ll get good information & advice here. I’m glad you posted your current questions.
The symptoms you mentioned can all be related to ES. The symptoms ES causes can come & go but often there are a few that tend to hang around. Your sinus surgery most likely did not cause ES, in case you’re wondering about that.
ES symptoms come from irritation of up to 6 out of 12 of our cranial nerves & can also be caused by the styloid(s) compressing the internal carotid artery &/or jugular vein. Your headaches & facial pressure could be coming from an irritated trigeminal nerve. It has 3 branches & can cause pain all over your face & can create migraine level headaches when it is unhappy. The other source of headaches can be vascular compression which can cause migraines, intracranial hypertension, vertigo, pulsatile tinnitus (though tinnitus can also be caused by the trigeminal & some other nerves), fainting, and the like. I am not a doctor but the way you describe your facial pain/pressure & coinciding headaches, it seems more likely that this is coming from your trigeminal nerve. Additionally, the vagus nerve is almost always affected by ES. It can cause a huge range of symptoms from pain at the back of your skull, to heavy duty anxiety (yes, ES can cause anxiety), heart palpitations, blood pressure issues, vocal loss, & gastrointestinal issues to name a few.
There is a series of videos about the cranial nerves on YouTube called Two Minute Neuroscience. These videos show the location of each of the nerves, discuss what each innervates & what symptoms are caused by each nerve’s dysfunction. The 6 nerves most often affected are the trigeminal, facial, glossopharyngeal, hypoglossal, accessory & vagus. There is also a lot of information available if you do a Google search on these nerves.
Going to the neurology appointment well informed about the potential nerves affected in your case may be helpful though you may also get “shut down” as some doctors hate patients who try to “self diagnose”. Additionally, if (s)he is willing to help you, anything offered short of surgery will be a “band-aid”. It may help for awhile, but ultimately, you’ll need to have the styloid removed to stop the nerve irritation & truly experience a “cure” for your symptoms. Questions you can ask would be 1) Are you familiar with Eagle Syndrome? 2) If so, do you do ES surgery or can you recommend someone who does? 3) If not, you can tell him/her that you know most of the symptoms come from cranial nerve irritation, then ask how the neurologist can help you manage the nerve pain/pressure until you’re able to find a surgeon to do surgery for you.
**If this doctor says surgery is risky/dangerous &/or won’t help you, please don’t let that deter you from considering surgery. ES surgery when done by a competent, knowledgeable surgeon is highly successful. In truth, ES surgery is major surgery, but when the symptoms get bad enough, most people are willing to take the risk and have surgery done.
I will attach our US Doctors List for you so you can check out doctors most local to you. You will need to find a skull based surgeon. These are most often ENT cancer specialists, neurosurgeons or maxillofacial surgeons. The majority of doctors on our list fall into the ENT category. We recommend external surgery (over intraoral) as nerves & vascular tissues can be better monitored during surgery & the styloid & stylohyoid ligament (if calcified) can be completely removed from skull base to hyoid bone. Some surgeons prefer to leave an inch of the styloid behind to protect nerves that are very close to the skull base. As that is normal styloid length, those surgeries are usually very successful.
https://forum.livingwitheagle.org/t/us-doctors-familiar-with-es-2019/4752