Originally Posted by painintheneck1
Hi to semcsquared and anyone else who reads this and suffers from GN. I have had the GN pain for 9 years! Of course, for the first 5 years, it was not diagnosed and I even had my tonsils out at age 50 because the dr. and I were convinced that the agony was caused by by yucky tonsils. Unfortunately, that procedure made the pain much, much worse - not just during the recovery but from then on.........I have tried several anti-seizure meds, things like Cymbalta for neurological pain, and narcotic pain meds. I see a pain management dr. at this point, which is a way different bird than an ENT (they give you a tissue when you cry!). Even after a diagnosis, which was based on history - not on the numerous scans - I was deep in denial about actually having GN....I just kept thinking it was something way more evil lurking in my neck, throat, ear and tounge. Two months ago I begged my ENT to give me a final MRI and also to biopsy two little bumps in my throat - coincidentally where the pain is - those bumps turned out benign (THANK GOD) and are not related to the pain. On the request for the MRI, my dr. specifically asked the radiologist to LOOK for looping arteries in the brain stem near the root entry of the glossopharyngeal nerve........wellllllll, I'm a believer now! My dr. showed me the film and WOW, it is so very visible (a looped artery on top of the nerve) that I'm amazed that it was never seen before. I just couldn't wrap my head around a "likely GN" diagnosis, but once the dr. specified WHAT TO LOOK FOR and it was FOUND, I understand what this is all about - I had a very good visual! For my own reasons, I just NEEDED that! So if anyone is skeptical and digging for answers, maybe your dr. could be SPECIFIC......that was my 6th MRI, and the first conclusive diagnosis.....yes, the dr. had given me the "likely GN" diagnosis earlier, but I was not convinced. By the way, over the past 9 years, I've seen 12 different ENT's, and even spent a day at Barrow's in Phoenix having scans - they saw absolutely nothing remarkable.
Interestingly enough, I THINK I'M N A REMISSION - A GOOD ONE! I am slowly weaning off the meds (YAY!!). I think I read somewhere (long ago) that sometimes GN goes away without surgery FOR GOOD. I am simultaneously thrilled and fearful that this is gone.....fearful that it will return. Has anyone out there had or heard of long-term GN pain going away - FOR GOOD? It started mysteriously, stuck around for years, and now seems to have vanished.......? I would love to hear from ANYONE who can relate to this. Hope I don't have to reply, "Never mind - it's BACK!"
And last.....a question about GN, does anyone have a metalic or bitter "spot" in the back of their throat where the pain is located? I haven't read anywhere that this is a symptom, but I sure do have a weird taste in front of where my right tonsil used to be. Would love to know if this is part of the whole thing.
Thank you in advance........hope everyone is having a pain-free day!