Hi I am new to this group. I am 34 years old. I feel as though I am someone that’s been experiencing symptoms for years but have been wrongly diagnosed or dismissed. I remember as a child feeling like I had a tooth pick stuck in my throat for months on end. I went to the doctor and evening looked fine. I was a kid that got strep and ear infections constantly so it wasn’t abnormal for me to have throat and ear sensations. When I was about 25 I suddenly felt like my throat was being squeezed and couldn’t swallow. I ended up in the emergency room 3 times where they said everything from possible MS to allergic reaction. I ended up going to a GI doctor who did an endoscopy and couldn’t really figure out anything wrong so said it was probably GERD caused by anxiety and gave me omeprozole and sent me on my way. Fast forward to 2020 I was eating dinner and felt a loud POP and felt a stabbing pain radiate to my right ear. I went to see an oral surgeon who looked at my scan and said “I think you have a fractured styloid… I think it could be eagles syndrome.” I was referred to an ENT since this oral surgeon said he hadn’t ever seen this in real life. The ENT basically poked around in my throat and said he didn’t believe it was. The pain seemed to go away after a few weeks and I forgot all about this potential diagnosis. In the last year and a half I have felt terrible migraines, neck and shoulder, jaw ,ear pain especially when I push my jaw forwards. I get a clicking sound in my throat almost like my esophagus is malfunctioning. The pain feels deep in my head like a dull ache mixed with some zap like pain in my throat when I swallow. i also have had a swollen lymph node that is directly under my ear. The base of my tongue feels as though is has a canker sore permanently there. The pain is all on this same right side. Doesn’t seem to get worse if I move my head it’s just constant and tends to get worse as the day goes on.
I have been to an ENT who didn’t seem to know anything about ES as well as a TMJD and Headache specialist who said he agrees that the pain sounds like ES although he truthfully does not have much experience with it either. I just feel like no one can tell me what’s going on and I am just so sad and depressed feeling like my life will never be normal again. I just got married in September and bought a new house and I just can’t even enjoy anything anymore because I’m so uncomfortable.
I met with Dr. Constantino 3 weeks ago who said it sounds like I have “Classic Eagles” and that it looks like I have a little harpoon in my neck on the right side. I am awaiting next steps which is to get a 3D CT. I keep calling his office and they keep telling me the doctors notes haven’t been sent over to insurance yet. It’s been 3 weeks so I have no idea if this is normal. I am trying to be patient.
In the meantime my primary has prescribed me Lyrica. I have been getting horrible headaches but the nerve pain in my tongue and throat area seems more manageable. But I don;t know if I should stop taking this medication or push through and see if the headaches get better. I also feel like my lymph nodes seem more swollen when taking it.
I am just so exhausted and feeling so defeated. I desperately want my life back. Some days I really have thoughts that this isn’t even a quality of life anymore. I feel trapped inside my own body in pain.
Sorry for the long post thank you all for your guidance.