Anyone get a painful/burning tongue?
sometimes, probably about once a week for a few seconds. Usually comes after holding my head in certain positions for too long. Giving gentle rubbing on the sore spots on the neck helps afterwards (for now).
Yes, I’ve had it from time to time…dissolving a bit of bicarbonate of soda in water & using that as a rinse can help. There have been a few discussions about it- it’s not a common symptom but has come up a bit- you could use the search function to look them up.
Yes. Have had it non stop, day in/day out since this began in March of 2020. Ive tried many different nerve modulators and nothing seems to help much. I’ve been told here that it’s likely nerve irritation and my surgeon feels that’s a likely cause as well. I’m still awaiting a surgery date so won’t know for sure until they get this miserable thing out of my neck.
Yes, also all day long every day, worse with eating, talking. My neurosurgeon claims going in my brain like he did for the trigeminal neuralgia surgery he could try to remove some irritation at the glossopharyngeal nerve, with no guaranty of course. This is so frustrating, I feel your pain. It really didn’t go away with the Eagle syndrome surgery, though, either. Sorry, this isn’t very helpful except maybe to know you (and me) are not alone in this awful journey. I hope you feel better soon.
I’m really sorry to hear that you didn’t get nerve pain relief from your ES surgery. I hope whomever you saw for surgery cut your styloids back as close to your skull base as possible. Some doctors don’t take enough of the styloid off to really make a difference. That said, we do have members that have very short styloids/no styloids now who’s nerve pain didn’t resolve. Many have found some form of nerve medication (Gabapentin, Amitriptyline, Carbamazepine, etc., reduces the pain enough to make it tolerable.
What you’re suggesting sounds like nerve ablation. That has helped some people, but unfortunately, it’s usually not a permanent fix because the body will work to heal the nerve once it’s ablated so sensation can return eventually. It might give you good relief for sometime though. I can imagine living w/ a burning tongue sensation is pretty awful. I hope you & your neurologist come up with the solution that helps you the most for the long term.