Hi DeeG,
We’re so glad you found this forum. Hopefully, you’ll finally get the answers you’re seeking so you can get the care you need to put your many years of symptoms behind you. I’m sorry for all you’ve been through & all the diagnoses you’ve received w/o resolution to your symptoms by any means.
The best type of scan to get is a CT scan w/o contrast. Some of the more experienced ES surgeons prefer no contrast in order to diagnose ES. Contrast does show vascular impingement, but it also makes it a bit more difficult to see the styloids & stylohyoid ligaments because the soft tissues in the area are highlighted. Getting a CT scan of the area between your skull base & your hyoid bone will enable your doctor to see the styloids & the stylohyoid ligaments if they are calcified at all. The radiologist who reads the scan should be able to measure your styloids & comment on whether the s-h ligaments are calcified. Once you have that done, I recommend you send a digital copy of your CT scan & the written report to one of the more experienced ES surgeons on this forum to get an opinion. They do charge for phone consults (health insurance often helps pay for at least part of this type of consult). Getting the opinion of a seasoned ES doctor would be invaluable to you. Knowing for sure one way or the other will certainly help you going forward. Four doctors w/ a lot of ES diagnostic & surgical experience are Dr. Samji, San Jose, CA; Dr. Cognetti & Dr. Newman, Philadelphia, PA (they don’t work together); and Dr. Milligan, Phoenix, AZ. Any head & neck surgeon or ENT w/ skull-based surgical experience should be able to do surgery in the area where the styloids/s-h ligaments are.
Here is the link to our US ES Doctors’ List for your reference: US Doctors Familiar With ES, 2019
The only true “cure” for ES is surgery. External surgery (through the neck) allows the best access to the styloid process so it can be removed to the skull base & the stylohyoid ligament so it can be removed from the hyoid bone to the tip of the styloid process.
There are links to a number of ES research papers in the Newbies’ Guide. If you’d like to do some of your own research.
I hope this information is helpful for you. Please let us know what you learn & ask questions, feel free to vent & let us know how we can support you as you search for a proper diagnosis.