She found a FB forum of people that had self diagnosed and described how they figured it out.

She had her catscan and MRI and used the images to create a 3D rendering of her head using software she downloaded. She was able to clearly see that her styloid was elongated and that it was pushing up against her jugular. She took it to a ENT that was a friend of a friend and after hearing all that she had gone through, he was willing to consider surgery.

We were lucky we found him and he was willing to listen.

We consider it a miracle that she figured it out.