Susan, and others,
Hello and I’m really sorry to hear that you are having this type of pain, this is where my" experience lies" if you will, and I will try and explain what my encounters have been with this, for me initially it was believed to be TN that I had ( I have TN in my family, and the additional drugs I was taking were what was giving me ATN type pain in my face, but that is another story) after 2.5 years and a lot of battling with the health care system on my part I was diagnosed as having glosso neuralgia, but as a secondary condition, not through arterial compressions or tumors or anything of that nature but from a condition called eagle’s syndrome, now eagles is a conditon where you have either calcified ligaments, or extended styloid processes in your neck, which are essentially tusks, and what happened to me was that this wasn’t picked up in the MRI’s because they focus on your nerves being compressed once they enter your skull, not before they enter when they are still in the neck space.
The physiology causing eagles is common, being symptomatic with it is very very uncommon, and for it to cause an actual neuralgic pain is rarer still, mostly it’s discomfort and foreign body sensations you get in your throat, but depending on where your bones hit, it could be causing all of your problems.
I am now waiting for surgery, this isn’t a pleasant process but it is far far less risky than a GPN MVD or severence of the nerves, andit entails the tusks being snapped off, they can do it in either of 2 ways, by going in through the outside and cutting the bones ( which is preferable for the patient, albiet you have visible scars and the procedure is longer, it is less risky for deep space infection and blood loss that you can encounter in the other option) the other option goes in through the back of your throat, they whip out your tonsils ( if you have any left, mine had grown back, and they snap the bones out that way, but it’s a quick and relatively easy op for the surgeons to perform.
This is a widely understood and acknowleged issue for ENT’s to see, neuro’s are not so understanding of the condition, and they may try and fob you off, they may have even told you it was all psychosomatic since they have found no cause for the pain.
I’m working with Ben at the moment to set up communities for both of these conditions, so everyone will be more than welcome to join us once we are up and running it’s just so that these areas are getting their own designated space, rather than just a little corner here and there.
I don’t know if this info is of any use to anyone, but I would advise anyone with ear/throat pain to have a neck CT done to rule it out before looking at any of the other more risky procedures out there. This is just my experience of it, and I’m no doctor, but thought I would share my thoughts on this, and hope that it will be of some help.
If you have any questions on it though, please let me know and I’ll help in any way I can.
Much love Gracie x x x