Hey their everyone, not yet diagnosed but im 90% sure i have a sort of eagles syndrome, symptoms started late 2014. Neck pain, stinging zapping sensation in my throat when ever i swallowed or opened my mouth really far. Then i noticed my vision started going funny intermittently, all hazzy an staticky. Then one day it just never went away & since that day ive never been the same person, withdrawn from everything ive ever loved… Fast forward a few years i started to see doctors an ect them just saying it was anxiety… Fast forward to recently. I have pretty bad face swelling on the right side, neck swelling on the right side & it feels as if i cant move my right eye properly… I firstly suspected horners syndrome, but because i dont have miosis the docs said it cant possible be horners…
These last couple of weeks have been hell. I have a ton of pressure in the right side of my throat & really bad vertigo/ dizziness, my vision keeps fading in an out. I just dont know what to do… Ive rang emergency an they just said to follow up with my gp.
Ive been doing alot of research on eagles an have had a fair few scans that show tell tail signs of eagles if anyone would like to see.
Your input would mean to world to me, i think like alot of us, i just want my life back.
Hi & welcome!
It does sound as if it could be Eagles causing some of your symptoms- the zapping in your throat sounds like nerve pain, and there are medications which can help with that (details in the Newbies Guide Section I sent you a link to under 'ES Info- Treatment). Eye issues can be due to the Facial nerve being compressed, which controls opening & closing, and vascular Eagles can cause eye symptoms- either through the carotid artery being compressed, or if there’s jugular compression it can raise the pressure inside the skull which can cause damage to the optic nerve. The eye symptoms definitely should be looked into- have you seen an ophthalmologist? If you haven’t then I’d get that looked at- I’m not sure about the system in Australia, but in the UK we can get eye appointments without going through a GP for basic checks, and they can refer you to the hospital if there are concerns…
Vascular ES can cause dizziness etc too, and compression of the Vagus nerve can also cause anxiety. Swelling of the face & neck isn’t common with ES, so not sure about that…
My advice would be to ask your GP for a referral to an ENT or a skull base surgeon, or one of the doctors on the list ideally. You’ll need a CT of the base of the skull down to the hyoid bone, ideally with contrast so that’ll show if blood vessels are involved, I don’t know if a GP can refer you for that or if you need an ENT to do that? If you’ve already had a CT, feel free to upload it here or use dicomlibrary to upload it (just make sure you blank out any personal info on it) & hopefully we can have a look. If your GP isn’t being helpful about referring you, you could print off some info like one of the research papers about ES to show them, and there’s also info on here about advocating for yourself here:
Latest Patient Self Advocacy topics - Living with Eagle
I hope this helps!
Hey Jules, thanks for all that info i really appretiate that, ive just uploaded some photos of my scans, its so weird how this disease can cause so many issues. Ive been to an opthamologist an they did all the tests an said my eyes themselves are fine with no issues but that was a few months ago. Im definitely going to talk to my gp about a referal. Ive also seen a neurologist twice an he was trying to send me to a cardiologist lol. Ive ruled out migraine disorders aswell… Ive already found a specialist on the list on here aswell which helps.
Hopefully you have some intell on my scans too. Thanks.
I’m sorry I’m not knowledgeable enough to comment on your scans ; it looks like there could be some calcification where the stylo-hyoid ligament would be on the first image, but I couldn’t say on the other ones…hopefully someone with more knowledge will be able to comment…
I have been studying his scans, and compared them to mine. They look almost identical. So im holding a button on calcfied ligamentum stylohyoideum 
-Henrik
@Liam - if it is your stylohyoid ligament that’s calcified, it could be pressing on your carotid artery & Horner’s Syndrome can be a result of carotid compression/irritation. That’s definitely something to follow up with as internal carotid artery compression or irritation can lead to stroke like symptoms & very rarely a stroke.
Hey mate thanks for that, im actually getting a carotid artery ultrasound done tonight as ive been getting alot of pressure/ dizziness
Make sure they do your carotid ultrasound dynamically i.e. with your head in different positions like turned left/right, looking up/down & on the diagonals. Sometimes compression doesn’t show when the head is in neutral position (face toward the ceiling).