So long story kind of short 
. I have ES Bilaterally and have had intraoral surgeries. My second surgery was about 2 1/2 years ago and about 1 year ago I had a return of symptoms only a bit different and more crippling. I fought for a repeat MRI which showed no styloid regrowth- at which I was stamped crazy 
by my ENT department. I then had a Myriad of symptoms… neck swelling, inability to drink cold liquids, jaw tightness on the affected side until I eventually developed stridor right before Christmas. I ended up on steroids from another ENT who saw me in an ED for “inflammation “and two days later I was in the ICU on a ventilator.
After being seen and being called a faker by the chief of the ENT department while in the ICU during my 7day stay (where I am a NURSE at this major health system) Someone offered to have our medical Liberians pull all ES related reaserch for me as I was spiraling into a deep depression- I couldn’t eat-sleep-loosing money from all the work I was missing- and in all these case studies I found a little tiny blurb about Glossopharyngeal Neuralgia, and it ONLY being rare because doctors don’t consider it- and it having a close relationship to guess what? STYLOID OSSIFICATION! It went on to list the symptoms and I was so pissed this wasn’t considered I couldn’t see straight! I asked for a referral to a neurologist- one specifically saw my chart asked for my case, and I left her office in tears as if I had won the lottery!!! I am on tegretol and I am eating and sleeping!! And yes I have filed a HUGE grievance!!!
Sorry that you’ve been through so much… glad though that you have found some medication which helps. ES is listed as a possible cause of GPN, I’ve seen it quite a bit while looking into both, so I’m surprised that the doctors didn’t know this.
I would say though that MRIs aren’t the best scans to see exactly what’s going on with your styloids, so maybe if you feel up to another battle it might be worth pushing for a CT instead. It would be good to know whether they have regrown, were your styloids shortened enough, did you have calcified ligaments as well & were they removed, or is it scar tissue causing the new pain you’re getting? If the pain relief is working enough for you, you might decide to let sleeping dogs lie as it were…
OMG what a horrible situation to go through. I so hope you you are getting some relief and never go back to anyone connected with that hospital ENT department. I finally had right side ES surgery last Nov in San Jose, Ca. Dr Samji found carotid compression as well as Glossopharyngeal Neuralgia. I was blessed with a smooth and almost painfree surgery and recovery. All went well and I can certainly tell the difference on the right side compared to left now where there is still a lot of pain and symptoms. I have no idea where you are located, but have to say, if you are looking for a 2nd opinion or a further surgeon…he sure did a wonderful job for me.
Wishing you the very best with your grievance and so glad you are getting some relief without the meds. Best of luck!
The usual disclaimer that I’m not a doctor, but I’d second Jules’s suggestion of getting another CT if you can to see if you have regrowth or calcified ligaments or some other issue. GPN can be a secondary symptom of ES or other conditions. If the doctors don’t know what caused the neck swelling and stridor, perhaps it might be worth investigating further to see if some other condition is underlying all these symptoms?
I hope you continue to get better and that you find satisfactory answers.
Hey there Jules! I forgot to mention I had a CT while in the ICU no regrowth… the neurologist did mention there could be so many causes of the GPN now and she was very disappointed it was missed… I’m opting out of surgery… For now… lol
There is a support group that might be helpful as you figure out how to deal with this, eaglemomjme:
Hi Gina45, really happy to hear you are recovering well from surgery. Have you found that your GPN symptoms have improved with surgery? Thank you and Wising you continued healing.