Well I sent in my scan and medical history to Dr Samji and I received a call from his assistant the other day that he had reviewed them and that surgery is not warranted in my case as the styloids are small and thin. I did not get a comment from her on the calcification but I’m sure he must have looked as he had the whole scan as well as the reports. I did put a call in to her again asking him to comment specifically on the calcification but haven’t heard back. Like I said he was reviewing my scan on the context on Eagles so i feel if there was anything there he thought he could help with I’m sure he would have said so. No surgery for me. The search continues. I wish everyone the best xo
I’m sorry that you haven’t got an answer to your pain, back to the drawing board for you…there is a section in the Newbies Guide about other possible diagnoses:
As you have mainly facial pain- sounds like the Trigeminal nerve and/ or the Facial nerve- you might find the Bens Friends Facial Pain Group helpful; they have more info on medications, nerve blocks etc which you might find useful, here’s a link:
I hope that you can get some treatment for your nerve pain and be able to get back to living, thinking of you
We had one other member who had only ossified ligaments who Dr. Samji declined to help. It would be worth it to pursue an answer from him about the ligament ossification as that alone is also considered to be ES & can cause ES symptoms. I would discuss that point with him, but it might go better if you were armed w/ links to a research paper or papers that point(s) to ligament ossification as also being ES. There may be links on this forum but you’ll need to search for them. On the other hand, he may feel there is no room for discussion & the subject is closed. There are a couple of doctors on our list who have done surgery for hyoid bone syndrome. You could try contacting one of them:
•Dr. Karuna Dewan, 801 Welch Rd, Palo Alto, CA (650) 723-5281 (Did surgery for Hyoid Bone Syndrome on one member)
•Dr Brad deSilva, OSU Wexner Hospital, 410 West 10th Avenue Columbus, OH. https://wexnermedical.osu.edu/find-a-doctor/brad-desilva-md-22675 . He has also done hyoid bone surgery.
I just found this information online: The stylohyoid ligament is a fibrous cord stretched between the tip of the styloid process of the temporal bone and the lesser horn of the hyoid bone. … Various conditions associated with symptomatic ossification of the stylohyoid ligament include Eagle’s syndrome, stylohyoid syndrome and stylohyoid chain ossification . Thus Jules recommendation to look at other possibilities is a good direction to go.
If you search “stylohyoid ligament ossification” on the internet, some research articles come up. I don’t know how accessible they are w/o access to a university library. Often you have to pay to see the whole article, but you can still get some basic info from the article abstracts which you can read.
I am also sorry that you need to continue to search for a “name”/diagnosis for what is causing your symptoms. I so hope you’re able to find out something more definitive very soon! We are still here for you if you need us.