Hey guys, very new to this group, and to Eagles Syndrome. If you take time to read this and comment, thank you.
*August 2023 brachioplexopathy on left side (landed on outstretched arm diving for a volleyball)
*February 2024; rotator cuff, labrum, bicep tendon surgery on leftshoulder
*July 2024; rotator cuff, labrum, bicep tendon on right shoulder
*December 2024; neck pain
*January 2025; numbness in upper cheekbone, ear (feels walled off, pressure), jaw, throat all on the left side… back of my head pain that goes down the neck to the trapezius, dizziness, and very dry mouth.
My medical Doctor had me do an x-ray of my neck that only showed arthritis, gave me 800m Ibuprofen and a muscle relaxer, & had me do a nerve test that I supposedly passed, and then went to an ENT that suggested I may have elongated Styloid process syndrome, which I later found out was Eagles syndrome. I am currently waiting on Insurance to get a CT scan. I noticed the scan I’m waiting for is without contrast. Should I be asking for with contrast too? While waiting, should I be seeing a dentist, eye doctor, neurologist or go to PT?
Does this sound like ES? Is it assumed that something above caused this? Things I need/could be doing to help the situation? I have many more questions if anybody would like to comment, or even direct message me to have a conversation. I am new to this and it seems very, very scary.
Also, sorry if this posted twice, was confused the first time sending.
@John-Wayne Welcome to the forum and sorry to hear that you are struggling. As you may already know, so many things can result in similar symptom patterns. A CT venogram, some docs order in neutral and with flexion, is the correct exam. It does include contrast. If it were me, I would wait for those results to determine who to see next.
Hi and welcome!
Feel free to ask questions here, if we can help, we’ll answer!
It sounds as if you could have nerve pain the styloids can irritate various cranial nerves where they exit the base of the skull- the most common ones are the Trigeminal and Facial nerves which can cause pain in the face, jaw, teeth, temple etc. And the Glossopharyngeal nerve, which can cause throat pain or difficulty swallowing. The spinal accessory nerve can cause arm & shoulder pain, so it might be worth asking your doctor if you could try one of the nerve pain medications like Amitriptyline, Gabapentin…there’s info in the Newbies Guide Section about common symptoms & what might be causing them, and medications to try…
Given you have dizziness and ear pressure, as these can sometimes be caused by pressure on the blood vessels by the styloids, it might be worth as @Chrickychricky says trying to have the CT done with contrast. The ideal is to have one done dynamically, with your head in different positions if you find that there’s any positions which bring your symptoms on more, although not many places so these, hopefully if your head is in a neutral position it’ll still show if there’s anything going on.
I wouldn’t worry about seeing anyone else; unless a physiotherapist is very knowledgeable about ES, it could do more harm than good. A neuro could prescribe nerve pain meds for you, but your PCP/ GP should be able to do that anyway, & they might want to do other tests which could hold things up with your insurance. If you notice any changes with your vision then an eye exam would be helpful, but if yours hasn’t changed then I don’t think you’d need to see one. I’d be wary of seeing a dentist too- some members have been diagnosed through having a panoramic x-ray at the dentists, but lots of us have also had unnecessary dental work done because of tooth pain, caused by the irritated Trigeminal nerve! Heat and or ice can help, and sleeping propped up a bit at night might help if you feel head pressure or have headaches in the morning.
ES can be caused by neck trauma, so it’s possible that your volleyball injury might’ve set off inflammation, or maybe even the surgeries if your posture changed with those injuries…
Hope that you don’t have to wait too long for the CT scan, if you can get copies of the images that’s helpful in case you want to send them to any doctors or post them here- not all radiologists are aware of ES, so we have had members get reports stating there’s nothing untoward with their CTs, when there is!
