Hi Jojo1,
First off, your symptoms are definitely those we see w/ ES. It sounds like you probably have it bilaterally w/ the advent of your new symptoms on the left. I posted the info below in another discussion. It should help you understand the need for surgery in order to cure ES:
The symptoms of ES come from irritation of up to six of our cranial nerves which “live” in the neck near the styloid processes. Elongated styloids &/or calcified stylohyoid ligaments can also cause compression of the internal carotid artery or jugular vein when the head is in certain positions (this varies w/ each person). As you can see, it’s removal of the styloid process(es) &/or calcified stylohyoid ligaments that will allow the nerves & vascular tissues to recover thus surgery is the only real cure.
If you want to research which nerves might be causing your symptoms, visit YouTube & watch some of the Two Minute Neuroscience series - specifically the ones that cover the trigeminal, facial, glossopharyngeal, hypoglossal, accessory & vagus nerves. These are the 6 cranial nerves most often affected by ES. Though your symptoms seem mostly like trigeminal nerve irritation, you may still be interested in the effects of dysfunction of the other 5 nerves. It sounds like you have irritation to your facial, trigeminal, vagus, hypoglossal, & glossopharyngeal nerves at the very least. Having your styloids removed should make a big difference as these nerves will be able to recover & regain more normal function. It is important for the styloids to be removed as close to the skull base as possible & if there is calcification on the stylohyoid ligaments, those need to be removed as well.
Here is the link for the doctors’s list for countries outside of the US. These doctors have either diagnosed or done ES surgery for some of our members in Australia:
https://forum.livingwitheagle.org/t/doctors-familiar-with-es-countries-outside-us-2019/4753
Using the magnifying glass icon above, you can search the name of a given doctor to see posts where that doctor is mentioned.
Finally, we have been given the name of a doctor in Perth who is not on the list but will be added pending the surgical outcome for our member Simon. If you want to travel that far, I can give you it to you. The doctor Simon is seeing sounds wonderful.