Quick catch up I’ve had bilateral intraoral styloidectomies. One 5 years ago and the other about 2- now the right side (2 years ago ) has been flared up for over a year- causing stridor Landind me in ICU. ETC. CT shows no styloid regrowth. Neuro diagnosed me with glossopharyngeal neuralgia and started me in meds which kinda helped but then stopped. So I just had Mri/Mra looking for nerve/ blood vessel abnormalities but it was “normal”. It hurts to swallow. Cold liquids kill me. My ear hurts and now my right eye is affected like I have Bell’s palsy. When my pain is worse my eye is worse. Eating it’s like my throat gets tired of swallowing so I only eat a little. Neck pain is CONSTANT. I’ve been like this since December and am declining. Any other thoughts anyone?? ENT won’t touch me they just keep sending me to speech
Did anyone look to see if your stylohyoid ligament is calcified on that side? It most likely was left behind since you had intraoral surgery. If the radiologist was only looking at your styloids this could have been missed. A calcified s-h ligament even in the absence of an elongated styloid is still considered to be ES.
The stridor sounds really scary- did the doctors not identify a cause? There are other nerve pain medications, sometimes it can take a while to find the right one, so it might be helpful to see the neuro again if you can. Ben’s Friends also have a Facila Pain group with lots of good info & advice, here’s a link: http://www.livingwithfacialpain.org/ - you can just read the posts if you don’t want to join, or sign up if there’s something you want to ask.
My first suggestion would be the same as Isaiah’s- to double check that the ligaments aren’t getting calcified. Maybe otherwise there could be a build up of scar tissue from surgery which could be pinching the nerves?
If this is the case, I’ve seen a mention of cold laser therapy someone’s had to help with this, MusicGeek: Going to get help and surgery! Maybe you could message her to ask about symptoms & the treatment?
And here’s a link to a study which showed it might help:
https://www.ncbi.nlm.nih.gov/pubmed/23607736
I don’t want to be promoting any service, but if you google it, there’s lots of adverts!
And I wouldn’t know if it’s something you could get funding for either…
Best wishes, hope that something is found.
I’m so sorry eaglemomjme that you are suffering with your right side. I think that sending your medical records and images to Dr Samji or Dr Cognetti would be helpful in getting a second and well experienced opinion about your styloid and surgery. I also think you should find another ENT or probably better a neurosurgeon with experience in GPN if your current one is not willing to offer any further help.
My thoughts and prayers are with you.
Get ahold of Dr. Hussein samji office in San Jose it’s Camino ear nose and throat he’s the best at it he has taught all these other drs how to do these styloid operations and is the best just had one done on March 19 and am doing well 408-■■■■ his nurses name ■■■■ fax 408-227-6314 so give them a call and if you have a ct scam fax the report and images to them they are the best answer and he’s the master very nice and professional people at the establishment very pleased with the out come how hope this will help your a beautiful woman and don’t deserve to be in pain im always here with help and alohaaaaaa and an open heart and mind so don’t hesitate to hit me up aloha Lance buzz eagles Rittenhouse Aloha good luck and if you need anything let me know gotta stick together on this there is life after eagles syndrome aloha Lance buzz eagles Rittenhouse :)))))))) and what’s your real name aloha
Four zero eight two two seven six three zéro zéro that’s the clinic number and my phone number is eight zero eight nine three eight zero three four zero so hit me up I’m here aloha friend hope you feel better and again hit me up always willing to help aloha Lance