Thank you so much for your response. I’m having a “bad” day with this today, so I found it reassuring. I finally will have my ENT tele-visit tomorrow to go over the results. I’m actually hopeful that she recognizes it more, since yes, she spotted it right away, even before my exam, as I’d described symptoms I’ve had for nearly 18 years all the way to symptoms I just started to experience this year.
Honestly, I kept telling my regular physician different things that would happen to me and he had no clue to their cause. I started feeling like I’m crazy or he thinks I’m a hypochondriac… For example, I’ve complained to my doctors for 18 years about headaches radiating from the back left bottom part of my skull, but then 2 years ago I had a really weird episode while at the dentist, laid back in the chair, I immediately felt a hot flash in my face, the room was spinning, and I couldn’t focus my eyes. They wanted to call 911, but it relieved itself within about 10 minutes. This happened a couple months later when I was bent down doing some work at home and stood up quick, and another really bad case of it when I went on a hike up a mountain ridge, I reached one point where I collapsed with the world spinning, hot flash, pinpoint vision and nearly blacked out, I had to be helped back down off the mountain. Then about 4 months ago, just sitting in a class, I started spinning again. About 6 months ago, I started having hearing issues in my left ear, where the world sounded muffled, like my left ear was in a paper bag. This did not come or go, it lasted weeks, then diminished but still returns a couple times a week now. Then about 4-5 months ago, I started having trouble swallowing. I can’t look right and swallow without significant pain on my left and something physically “popping” in my throat. I can look left okay, but when I look right, it feels like my neck and throat are being stretched like a rubberband, and I get a dull pain at the base of my skull. Just those symptoms alone is what made my ENT say (literally), “Oh my god, I know what you have. You need to go home and look up Eagle’s Syndrome”. She then did the scope, had me press my finger on my throat where it hurts and pops, and there on the screen was a massive bump of bone or something pushing into my throat. That’s when she said, “Yep, Eagle’s Syndrome”. She ordered the CT scan to confirm.
That’s when I posted here, after I got the initial radiology results, because I was expecting a note confirming, clear as day… I can’t seem to find anyone throughout my entire medical center (I go to Straub here in Honolulu) that has ever heard of it except this one ENT who wasted no time identifying the issue, almost as though it was something she did a thesis on in college, that’s how certain she was. There’s other symptoms that I didn’t even mention to her or my doc because they’re more infrequent, but one is occasionally when I yawn, it’s like my jaw gets locked forward like if I had an underbite, except it’s not and it’s just the muscles or something in my throat making it feel that way with extreme pain where my chin meets my neck.
I appreciate everyone here and all the encouraging responses people have given. Especially about recovery and such. I’m a public speaker and professional teacher, so this affects my ability to even work, and I’m fully booked all the way through early December 2022, so I can hopefully find relief soon. I can always reschedule myself for whenever I can get the surgery, but I can’t be out for a long time.
Thank you again, and after my ENT video call tomorrow, I’ll come back with an update. If it’s not as clear cut as I hope, I’ll start seeking a second opinion from one of the recommended docs here, but I’m hopeful that since she was so quick to call it ES, that she may be a new ENT for people with this in Hawaii. She’s fairly young for being an ENT who also does surgery, so she may be just getting started in her practice here.
Mahalo Nui Loa!