I am so sorry the plot has thickened, @Eagle1. You’ve been on my mind recently & I’d planned to check on you. It must be a relief to have a solid answer now as to the root cause of all your symptoms. Based on what you said, it sounds like the styloidectomies were an important step toward preventing further bone erosion by the IJVs so at least those surgeries weren’t unnecessary. There have been discussions about SCDS on the forum. Here’s a link to one thread that mentions it as possibly being related to ES:
Do you have a surgery date at UCLA or is there more testing that needs to be done? Is 70-80% the typical amount of relief a person gets from surgery for this or is that what’s predicted for you because your situation is so bad?
I really appreciate you sharing what you’ve learned. It may truly help someone else on our forum.