I have been diagnosed with ES confirmed by a CT scan indicating calcified styloids down to C2 vertebrate. Went in for intraoral op and had Tonsils removed but the op was then aborted because the surgeon had second thoughts. I have now got an appointment to see MR Axom at Cambridge to see what he says (120 miles away from me). My question for fellow sufferers is " I cant feel my Styloids sticking in me at all, is this normal ?, because I have read that many can actually feel pointy things sticking in them either all the time, or when pressed.
Just a thought.
My main ES symptoms are Constant ear pain, Tinnitus and headaches. The pain and my lack of concentration is ruining my life. I have tried lots of different Meds but nothing seems to help much except possibly ibuprofen helps a bit. I do take regular ibuprofen which I know is bad for me. Fingers crossed Mr Axom can help me.
Hang on in there everyone, I think many of us are in the same boat, There is hope for us all, Im sure of it !.
Such a shame that the surgery was aborted & you went through that for nothing! I didn’t have the sensation of something poking in my throat, I could feel them with my finger close to the tonsils, & it did set symptoms off worse when I pushed on them. But everyone’s styloids grow at different angles so can’t always be felt yourself, it’s not a reliable diagnostic tool!
It’s good that you have an appt with Mr Axon, definitely mention the tinnitus as well as the other symptoms, as he’s quite interested in that & has done research, it got him very interested when I mentioned that, especially if it’s pulsatile tinnitus (hearing your heartbeat, like a whooshing)
Just wondering what medications you’ve tried? Have you tried anything for nerve pain, it might help with your ear pain? (like Gabapentin, Amitriptyline, Lyrica…)
I hope that your appt goes well, let us know how you get on!
Hi Jules, Thanks for your reply.
Ive briefly tried Ami, Pregablin, Gabapentin, and Carbamezapine, all several times, but they all make me feel spaced out and make my headaches worse. Not sure if I took them for months rather than weeks that I might get used to the side effects ?. I Dont like taking stuff that makes me feel worse than what I already do. Tramadol and Ibuprofen work a bit, but they are not great long term. My Appointment is next month with Mr Axon (I keep calling him Mr Axom, silly me) ,If he thinks I haven’t got Eagles then I am hoping he can come up with something else. Thanks.
If your CT scan shows your styloids extending to your C-2 vertebra & with the symptoms you’ve listed, you definitely have ES. Some people have elongated styloids but no symptoms. It’s when they’re long & symptoms are also present that the name Eagle Syndrome seems to come into play. Though it could be debated that even w/o symptoms, the presence of elongated styloids/calcified stylohyoid ligaments constitutes ES.
Jules has give you wise advice about the tinnitus as things have changed for Mr. Axon at the administrative level so he seems to look for more specific symptoms now before he will do surgery & among them are the presence of pulsatile tinnitus.
I forgot to say YIKES! about your surgery situation. How awful to have had hopes of recovery from your symptoms before surgery only to wake up & find the complete surgery wasn’t done. I hope Mr. Axon will step up to the plate & help you.
The nerve pain meds can take a while to build up in your system before they work, but it’s understandable if they give you headaches instead that you don’t want to take them…I’ve been lucky that Amitriptyline has helped me, the only time I’ve had headaches with it is if I’ve forgotten & taken it later in the evening, other than that no side effects. I can’t take ibuprofen any more…