Consult yesterday with Surgeon in Houston

Oh no, poor you, you’ve had such a rough time! It’s crazy how ignorant doctors are about ES! If you have copies of your imaging you can upload them on here (make sure you anonymise them first though)- there are tutorials on here to help with viewing images as well.
Firstly, doctors who say that the surgery doesn’t help, may well have not done a good enough job of it! If not enough of the styloid is removed, then symptoms don’t go away, it needs a skilled surgeon to remove them to the base of the skull, or as close as is safe to do. So if you’re able to see one of the doctors on our list who is experienced with surgery, then that would be helpful, I’ll attach it here:
Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
ES symptoms can ease up & then return, often with no apparent reason, but really surgery is the only cure. I would leave off the massage & PT for now, as they can worsen symptoms, & possibly do damage unless the practitioners are experienced with ES.
Pulsatile tinnitus is often ( but not always ) a symptom with compression of the Internal Jugular Veins. I had bilateral IJV compression, & had that tinnitus, it’s gone since surgery. So it could be that you have vascular ES - there’s info in the Newbies Guide Section about symptoms, here’s a link to that :
ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
So if you could get a CT with contrast, it would be helpful to see if the IJVs are compressed- it would need to be timed to catch the venous phase, & cover from the base of the skull to the hyoid bone. I don’t know if you’re able to get this done?
There are quite a few doctors on the list in Texas, although if you do have vascular ES then if you could travel it might be better to see a doctor experienced with VES surgery (like Dr Nakaji in AZ, Dr Hepworth in CO or Dr Costantino in NY), although they’re obviously a way away for you!
But I would say don’t give up, keep pushing & fighting for yourself! :hugs:

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