Hey there everybody, new user here, hope you’re all doing well.
Short introduction: for the past 2 years I have been suffering from debilitating chronic pain in the right sides of my neck, face and head. (Full list of symptoms further down) I have been to neurologists, neurosurgeons, dentists, ENTs, maxillofacial surgeons, and a muscoloskeletal physician. Had numerous MRIs on my brain, spine, face, and soft tissues of the neck, plus a CT scan on my sinuses and a few x rays on my teeth. Nothing has been found. No tumours, no MS, no TMJ, no unerupted teeth, nothing. At this stage all I have to go on is my dentist insisting that he still thinks it’s TMJ dysfunction (despite none of my scans showing anything wrong with my jaw) so I am skeptical that he is just trying to push me into an expensive treatment plan. TMJ also does not explain the throat pain which I am almost certain is causally related to the pain in my face, ear, and head.
I’ve known about Eagle Syndrome for a while but it was so rare that I never bothered looking into it further. However, it is now clear to me that whatever I have is not common, so I am having to revisit the rarer conditions I initially dismissed out of hand and start taking them more seriously.
I have long suspected that my right carotid artery is involved as the pain in my neck is right on that area. I had an MRI on the neck (neutral position) which came back negative on carotid artery compression. I thought this was good enough but now I am uncertain as to whether I should get another scan with my neck elevated and flexed at different angles.
I feel that my symptoms line up with those common in ES and the next logical step would be to undergo scans to rule it out. I would like to know which imaging tests are most accurate for this.
My symptoms are as follows:
- Feeling of lump in right side of neck, around the top right side of my Adam’s apple. When I swallow I can feel this area being tickled or irritated. Sometimes I can feel it ‘click’ or pop when I swallow, which confuses me. Turning head to the right is uncomfortable and very, very tight on this area.
(side note: strangely, eating food and drinking water can alleviate the pain briefly. I don’t know if this is due to swallowing things and briefly moving something in my throat away from something else? That’s the best I can come up with. However, if I eat things that are too hot or too cold the pain is usually worsened. Swallowing cold food, for example, I can instantly feel the cold radiating up to my right ear, where there is normally pain.)
Intense and chronic pain in the right side of my face, specifically the cheek. Feels like there is a lot of throbbing pressure in this area. Also this side of my face is visibly more ‘swollen’ than my left side.
Pain deep inside my right ear. Not sure if this is the eustachian tube as scans have not shown any blockage, and the pain and popping sounds feel much deeper than the common popping you get when you’re on a plane. However it does ‘crackle’ a lot as though it is blocked and feels intimately connected to the pain in my neck. (The ear pain used to be MUCH worse, and I could reliably pop it by pushing my tongue against the floor of my mouth.
The pain from my face goes up to my right temple and side of head also. Again, lots of intense pressure and throbbing.
Occasional, but not infrequent, aching pains in my right eye and just above it on my forehead.
Generally I feel very sluggish nowadays.
I know this is a long winded post (sorry) but a couple more questions if anyone is able to help: are there ways to personally test if I have ES or at least give me a better idea? Can I feel an elongated stylohyoid ligament or styloid process just by touch? I’m not sure where they are exactly and the rest of the internet hasn’t been very informative.
Also, any other advice on this would be very much appreciated, I’ve had this for a long time but getting repeatedly wrung through the medical system is getting more and more exasperating so if there are any tricks to make it easier it would be a huge help. Thanks everybody.