My last post I was scheduled with a surgeon at University of Miami, who on review stated she is familiar with ES. My neurologist referred me to her because he wasn’t comfortable making the diagnosis having no knowledge or experience with ES.
I saw her, UOM, 2 weeks ago. I was so disappointed and discouraged after that appt I didn’t even want to post anything here. It was a terrible experience! I drove round trip a total of 6 hours in pouring down rain. I had to get up at 4:30am for 8am appt. I had terrible brain fog because the day before I had a tilt table test with a nitro induced syncopal episode. I blacked out completely and my b/p and pulse tanked. So I wasn’t feeling the best to begin with. Upon arrival they asked if I had a disc with the films. When I scheduled they told me they would request them because my appt was less than two weeks from the time I scheduled it, so no films. Then the doctor comes in and tells me she doesn’t do the diagnosing and that needs to happen before I see her (which is what I would expect to happen, but my neurologist felt different). She then asks what my symptoms are (all of which lines up with what I’ve researched), she doesn’t elaborate, she doesn’t ask questions or inquire with further questions for specific symptoms (this is important because sometimes we live with symptoms so long it becomes our norm and we don’t think of it as a symptom, to inquire further is standard practice). She quickly responded and said, “those aren’t symptoms for ES”. Then tells me, “even if it was ES I wouldn’t operate on you”. That was it! She didn’t elaborate why or anything! She did the scope down one nasal passage and said she’d order a CT of the neck for me and sent me on my way. I was so disappointed and discouraged! I’ve been to so many specialists and really thought I had finally found the answer. But after driving all that way feeling as awful as I did it was such a discouraging experience.
I contacted my PCP for an ENT referral that she may know that’s familiar. She reached out to one and said he wanted me to get the CT first. CT report states, “elongated styloid process and bilateral ossification of stylohyoid ligament, which results in Eagles”.
I knew I had it. I’m a former nurse with a high self-awareness and have researched it thoroughly. It’s disappointing that the surgeon, I saw was so dismissive and didn’t appropriately assess. Instead of saying, those aren’t eagle symptoms, she should have inquired further asking about specific symptoms “she feels” are eagles symptoms. In addition, she should’ve explained what the heck she meant by, “even if you had eagles I wouldn’t operate on you”. She did comment afterwards that I would be able to find someone to operate on me because surgeons love to operate but she wouldn’t do it. Unfortunately, I felt so awful, was exhausted and stressed from the drive and had such a brain fog I didn’t think at the time to ask her to elaborate on any of this. Now, I’m glad I didn’t. I’m better off not having any further interactions with her and believe this was God’s way of protecting me!
I’ve messaged my PCP and waiting for an appt with ENT now. But wanted to share this experience because I would not recommend this surgeon to anyone and want to encourage you that sometimes when a doctor or surgeon doesn’t workout it just might be God’s way of protecting us.