I dont often post but i have read over the past year everyones stories and comments and i have to thank you all for posting as the info has been an incredible source of knowledge and comfort to me.
Im incredibly frustrated and wanting to ask if anyone else has been in the same boat and the outcome. Like many of you i have been on a long journey trying to get answers. I had a bad car accident two and a half years ago and started to develop strange tingling down my arms, across my face and eventually my tongue began to tingle and burn and i have difficulties swallowing. As time passed i developed pressure and pain behind my eye, TMJ issues as well as a cough, heartburn, neusea and palpitations. I also get quite light headed when walking or on extreme rotation of my neck and when lying down.
Originally i was told it was anxiety (who wouldnt have anxiety in our situations) After months of medication and stillbeing in the same boat i went back to the doctor who did an mri.
An Mri confirmed i had multiple disc buges at c345 and disc protrusion and nerve root enroachment at c7. Apparently all from my car accident. This was then determined to be the cause of my pain and left to treat by a physio but my symptoms kept getting worse who then suggested further investigations were needed.
I was then referred to a oral maxifollo surgeon due to suspected TMJ dysfunction. He cleared my TMJ joints saying they function perfectly but did suspect i have glossopharyngeal neuralgia so referred me onto a neurologist.
A neurologist did agree it was glossopharyngeal neuralgia and wanted to order the skull based ct and mentioned eagles syndrome as a rare but possible cause of my symptoms especially factoring in my symptoms began not long after a car accident. Low and behold I have a bilateral elongated styloids measuring 38mm on the left and 39mm on the right.
I was then shipped on to an skull based ent who did agree with the diagnoses but wanted me to seek an opinion from a neuro spine surgeon to rule out my disc issues as being the cause. He just said its important to rule those out as the operation to remove the styloids is risky and doesnt always work so he wants to be 100 percent certain there isnt another cause.
This is where my frustration begins or gets worse lol.
Under the care of the neurosurgeon i underwent a lignocaine spray trial which only eased symptoms slightly some not at all.
I then tried tegretol but it did nothing for neuralgia other than making me incredibly sick so was taken off the medication.
3 weeks ago i underwent a glosspoharyngeal nerve block that did very little. I had slight relief with my tongue symptoms but nothing else. Based on the outcome of the nerve block i was told by the neurosurgeon that i dont have eagles syndrome and he was going to diagnose me with Atypical facial pain without a cause.
I am frustrated beyond words. I do not understand how three other doctors all said i have eagles and this doctor disagrees.
Im now having to go back to the ent and hope and pray that he hasnt changed his mind on my diagnosis due to the neurosurgeons opinion.
My question to you all is has anyone else had a glossopharayngeal nerve block that didnt really help?? Yet still diagnosed as having eagles?
And my other question is Am I wrong for understanding 38 and 39 mm is considered long enough to be classed as having eagles syndrome if you are symptomatic??
Sorry im so frustrated as i have 2 doctors both claiming I do and 1 claiming i dont and that my confusion is because I was told i have eagles… urghhhhh