Hey everyone, just wanted to share a quick update. I recently had updated imaging done, which confirmed that my styloid processes are 6.5 cm on both sides—so it’s pretty severe bilateral Eagle Syndrome. I’ve been dealing with symptoms like intense, radiating pain in my throat, jaw, and neck, chronic debilitating migraines that can last for weeks, dizziness, facial numbness, difficulty swallowing, and even seizures and strokes. The unpredictability has been really overwhelming, especially because my partner and I want to start a family soon. I have a surgeon appointment next month, and while I’m hopeful, I’m also anxious—I just can’t keep living with this level of uncertainty and risk. Thanks for being here—it means a lot to know I’m not alone.
I will chronicle my journey here starting today so that hopefully someone else who is suffering can read this and feel less alone xoxo.
Good to hear from you! I was actually thinking about you this morning & wondered how things are going for you so your post is very timely. I really like your updated avatar picture. You look AMAZING!
Your styloids are tremendously long, & you’ll feel much better once they’re gone. It’s super important that you see a doctor who has a lot of experience with ES surgeries & who has also had many successful outcomes. Remember that getting your styloids cut back as close to the skull base as possible can help more with reducing or removing symptoms than just getting the styloids cut back to their natural length. It also reduces the chance of styloid regrowth.
Due to the vascular symptoms you’re experiencing, it sounds like your internal carotid artery(ies) are being irritated or compressed by your styloid(s). That’s what is probably causing your migraines, dizziness, seizures, & stroke type symptoms. I’m hoping you’ve only had TIAs which are like mini strokes vs a full blown stroke. Your situation sounds pretty terrible so I hope you’re able to have surgery soon after your appointment.
If you’re interested in bilateral ES surgery, Dr. Hackman in Chapel Hill, NC, has lots of ES surgery experience & does those so you could get both styloids removed at once & not need to go through two separate surgeries.
•Dr. Trevor Hackman, UNC Ear, Nose and Throat Oncology Clinic – in the N.C. Cancer Hospital, 101 Manning Drive, Chapel Hill, NC 27514, (984) 974-6484
Your symptoms sound grim, I’m glad that you’re looking to have surgery! I second @Isaiah_40_31 's advice & hope that you can find a surgeon with experience- it’s certainly worth getting this done before you start a family!
Hi @Adro ! I’m sorry that you’re still experiencing so many significant symptoms. I know that it can be pretty scary to have such severe things going on. I’m glad that you have an appointment with a surgeon next month. I also live in VA & am wondering if you have found someone here in our state or if you are going out of state to see the surgeon. I also had bilateral ES and have only had one side taken care of with surgery. I’m kind of still in the wait & see mode to determine if I need to get the other side done. I have also been working on posture exercises, strengthening, and have done PT to try do address some of the issues so that I could maybe, possibly avoid having another surgery. I hope that your consultation goes well. Since you have a lot of vascular symptoms, I hope that the doctor that you are seeing is an experienced VES surgeon. Please let me know if you have any questions. This forum is amazing & provides so much info. I know that the people on here helped me with the overwhelmingness (which is actually a word ) of finding out that I had this pretty rare syndrome. You are not alone and you can feel free to reach out to me anytime!
) of finding out that I had this pretty rare syndrome. You are not alone and you can feel free to reach out to me anytime!