Hey everybody. I’ll try not to make this too long of a post, but I really appreciate everyone who’s active on here. Since being diagnosed with Eagle’s Syndrome, I wasn’t expecting the isolation from a rare diagnosis to be what got to me the most. It took me several months to find and see a doctor who could treat it, and the buildup to getting my diagnosis almost drove me crazy because none of the doctors were able to tell me what was wrong. It’s taken almost a year from diagnosis to get to my surgery, and the whole time I felt like I was clawing in the dark by myself trying to figure out how to navigate, and finding this forum helped put a lot of that at ease for me. So thank you all very much for your posts.
I was diagnosed in May of 2023 with ES. Beforehand, I had a consistent headache and a lump under my jaw (around the lymphnode area I suppose) for 2 months, beginning in February. The lump was what concerned me the most, but after one urgent care doctor told me " They could bipopsy it if you want, but they might hit your trachea and you’ll be on a feeding tube for months" I was beginning to think I was just making it all up, or that my anxiety was manifesting symptoms. It wasn’t until I was driving one day, and while feeling the lump I hit my breaks a little too hard, pushing it in until I heard a snap. 12 hours later, I woke up chocking on spit, unable to swallow or move my head from extreme pain in my entire throat and jaw regions. 2 CT scans later, the doctor came back and joked that I hit the lottery and got a very rare genetic disorder called Eagle’s Syndrome.
My time with it so far has been very wavy. I’ve had a lot of symptoms come up this year, but I’m not sure if all of them can be related to the ES. I’m hoping that they are though, truthfully, so that this surgery can put it all to rest. A lot of them are similar to symptoms i’ve seen in the forums: Headaches, neck aches, back aches, stomach issues, jaw pain, dizziness. I’m grateful that none of it has been debililtating, but thinking back on how long this has been going on, I start feeling as though I’m still running in a marathon.
I was able to find my doctor, Teresa Chan-Leveno, thanks to this forum. It took a while to get in, but once she saw me and my radiology report she immediately confirmed surgery. I will be getting a Bi-Lateral Styloidectomy this 16th. I’m very nervous about it, especially the healing process, but I’m confident i’m making the right choice. I’m 26, so I’m hopeful that I’ll heal fast and without issue.
I’m not a super active person online, but I’m very grateful for all of the posts here. It’s been very comforting to know that I’m not alone, and to read the experiences of others on here who have gone through the same issues. I will do my best to answer any questions if anyone has any, and also do my best to report back after my surgery heals to give updates.
Thank you very much again.