I'm new to the ES group and I have to say, I'm so relieved to have found the group and learn about your challenges with ES. Though I would never wish this on anyone, I'm glad I'm not the only out there dealing with the pain, discomfort, and anxiety of the condition.
As I've read through your discussion posts, I've realized that my story is pretty much the same as all of yours: years of pain and the unknowns, numerous doctors, countless exams and tests, failed treatments, and (of course) never getting a diagnosis.
Recently, though, I saw a terrific doctor -- one of the rare kinds who takes the time to discuss symptoms and truly believes that something is wrong -- who gave me a tentative dx of ES. Though my symptoms indicate ES, he was unable to find "physical" evidence of the disorder (e.g., elongated styloid or ossified ligaments either through manual palpation or in my scans), so he was only comfortable with the tentative dx. He referred me to "The University" (UW Med School) for further evaluation, but that appointment isn't for another month.
What worries me right now is the inconvenience of an across-state trip and that insurance has agreed to only allow a single visit (no tests/scans permitted) with this doc. I have assembled an entire notebook of reports, results, and scans to (hopefully) avoid more tests that insurance won't pay for. BUT...if this doc can *confirm* ES, it will have all been worth it!
This seems like a supportive group and I'm so happy to have found you!
Just wondering what scans you have had? A CT with contrast is generally the best. Have you been given any measurements of the styloid processes? Only a lot of doctors do use different 'average' lengths as a comparison. It varies from 2.5- 4cm being considered normal by different doctors, so finding out what the length is would be handy. There is also research which shows that it's not just the length of the styloid which is important, but the angle it's growing at, for example if it's at an angle towards the C1 vertebrae's processes it can compress structures imbetween. It might be worth looking into that if you can. There's details of the research in the ES Info section, plus also common symptoms- some of which doctors aren't always aware of. It sounds like your doctor has been very kind and helpful, so perhaps he can help with some questions, and I'd advise going into your next apt as prepared as you can be- print off research, print off common symptoms if they are similar to yours, and a lot of members have found it helpful to get copies of their scans in case they don't get sent on ahead.
I've had a CT with contrast which hasn't revealed much. I just did a 3D rendering of my CT scan using SnappleofDiscord's tutorial using 3D Slicer. But, alas, though I can isolate the styloid process/stylohyoid ligament, I can't really tell whether it's elongated or not (i.e., there's no scale on the program that I could find, so can't measure it).
In addition to bringing all my reports/scans, I'll track down some research to bring to my appointment too.