Hi all. It’s been a while.
I was diagnosed in early 2017 (I think? Late 2016? Gee. I don’t know); though I met with a head and neck oncologist who knew about and had performed procedures for Eagle’s Syndrome, he was hesitant to do a procedure.
My styloids are not outrageously long, but I definitely feel them/they became a more annoying and painful issue in the last few years. Even then, I was on the fence. This surgeon was willing, but only if I really wanted to go through with it; he made me aware of the pain and the risks, and says that he has had more people who had success with it, but also some who said that their condition worsened after the fact-so he wanted me to be sure.
I think he wasn’t convinced that my pain was enough to go through with a tonsillectomy / this procedure - he wanted me to try the steroids first, which didn’t do a whole lot for me. Which is fine-again, he was willing, but I think he wanted me to be sure that it wasn’t something I could live with / avoid surgery as a young person (I don’t know). I understand why he would want to save someone who wasn’t totally at a loss yet the trouble; but here I am now, ready to commit.
Here’s the deal: I haven’t had a whole lot of issues with this, but I did contract a virus about two weeks ago, and came up with the most bizarre sensations / pain on my right side (my problem Eagle’s side) - with seizures and some scary, scary residual neurological (I’m concerned even cardiac) issues that thank God, have cleared up more every day that the virus went away, but that are so concerning and not completely gone. It’s been a ride; my patience has been tested-learning just how much patience and sometimes trust you have to have when you can’t get to the right specialists right away. Ugh. Yikes. It’s been hard and scary.
It became clear that these seizure episodes (?) were being caused by this neck sensation that, I originally, thought was the elongated bone itself causing the issue- when you have to wait three weeks / don’t know what you’re dealing with before you see your specialist for this stuff / don’t get a great response or urgency with anyone else, you do some research.
Typing in the very specific sensations, I came across glossopharyngeal neuralgia, and the symptoms fit to a tee; I saw immediately that this could be triggered by viruses, and (so nuts!) can be irritated by Eagle’s syndrome, even if distally-this just matched the minute I read it, and was the about the only result from the adjectives that I was using. I saw that there was even more to it, with the potential vago-version of it, that I am hoping that is not full force (but again, I am getting better every day, still with some lingering concerns)-I did have some arrhythmias and chest pressure, and when it was really bad, it seemed almost threatening to my heart/blood pressure. I never passed out or had syncope, but it felt like it could’ve happened any minute. This condition just makes sense considering all things, and I have decided that I am just not dealing with this threat again; no way. This surgery has to happen. I’m donezo!
I have no idea if Dr. Coughlin (anyone?? Omaha?) will be thinking this before I suggest it (I am not going to be afraid to share my thoughts with him after waiting this long, no way), and if it may be an urgent matter or if he will be scheduling this surgery a few weeks from now (gosh, I just want it over with).
He said that he would likely proceed intraorally/ maybe he will change his mind after this; I am hoping that he is educated on not just the fracturing. This is my concern; any suggestions to ask him / demand answers from his process? He didn’t mention nerve monitoring–I don’t believe. I am just not sure there is anyone else in Omaha who does this procedure, and it is getting to be potentially a time-sensitive situation. I will go ahead with it with him, but if anyone has thoughts or suggestions I am open to them. It was also only to be done to my right side though I do have bilateral elongation.
Thank you all!