Hi all! This is my first post, seeing that I was just diagnosed with Eagles less than 2 weeks ago. I am praying that I am finally on the right track now and that there could be better days ahead. I could really use any words/stories of encouragement that things could get better.
It has been a long journey. My symptoms started 9 years ago. The most noticeable symptom at that time was the left side ear fullness and this disequilibrium sensation as though I was rocking on a boat. I was in my first year of teaching and these symptoms seemed to have appeared while I had a head cold. I assumed the symptoms would go away once the upper respiratory infection left, but the symptoms persisted. A few years later, after multiple clear scans and tubes placed in my ears to try and relieve the pressure, I was diagnosed with Palatal Myoclonus. My scans again did not show any concern or reason for the palate movement. I have pain on the left side of the palate where the original movement is coming from. I have been wearing a jaw splint for many years now to try and help with my TMJ ( come to find out that my TMJ is not that bad and is not really the reason for the intense pain on the left side neck/jaw/palate area where it feels like something is being pinched). The daily left side pain, pressure headaches, nausea, left side ear fullness and this awful moving sensation have caused me to go into a deep depression. I was not sure if there was any hope left. I am 36 and desperately want to be a mom and just have “normalcy.” I would be the happiest person ever if I could get rid of these daily debilitating symptoms. After trying what feels like everything, years of being treated for migraine, TMJ, vestibular rehab etc. I had a cone beam CT from a TMJ specialist that came back stating that I had intermittent bilateral calcification of the stylohyoid ligament indicating Eagle’s Syndrome. The TMJ specialist that ordered the scan does not know of a physician who treats Eagle’s Syndrome, so now I am on the search for a knowledgeable physician with this condition. I live in Montana, but will travel wherever it is I need to go. If any of you have had these symptoms and have found relief, I would be so grateful to hear about your experience! Also, is it possible for me to be experiencing these symptoms if I only have calcification of the ligament? Thank you, from the bottom of my heart, for taking the time to read this and for any positive insights you may have.