Quote:
Originally Posted by kkaabboomm
hey -
I thought I'd stop by in case others google GN and stumble upon this site, or anyone here has questions or anything else.
I got hit with GN in October 2009, and had surgery in December 2009. As a 24 year old male, the stabbing ear pain 4 times a day was not something I could handle.
I went to ENT's in multiple states, all of whom ruled out every ear problem possible. Finally a pain dr said I might have GN and told me to find a Dr who could help.
I got in with Dr. Horowitz at UPMC (Pittsburgh) and he sent me to his favorite ENT and oral surgeon there to rule out all other possible issues. He finally asked me to describe the pain again to him and figure out a way to show him how and where it hurt. Heres what I came up with:
It always felt like I had a bad ear infection, a constant, dull-ish pain in my right ear. My ear just...hurt. 4 times a day, for half an hour at a time, I got "pain waves" where it felt like an ice pick was stabbing me in my ear and wouldn't stop. How far in my ear? Well, if you take your standard issue pen, and go maybe an inch or two on it, thats how far. I used that as an illustration for him, because the pain was 'in' my ear.
Anyways, MVD fixed it, I'm great now, I even posted a video of the surgery (not mine specifically, but one Dr. Horowitz did) on youtube for anyone curious. My advice: don't ever give up if your head hurts like mine did. Figure out whats wrong, and get it fixed if possible.
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I've had this for 11 years now and im only just finding out what it is.. i've been to countless ENTs and ERs and dentists and nobody could give me any answers. I was called a liar too many times and i got discouraged. I was only a kid. Anyways, its been getting worse really fast lately and its literary debilitating now.. i found a neurologist and poured my heart out to her and she believed me at long last. she knew right away what it was
she prescribed me meds but they make me feel funny so i cant take them in the day like im supposed to because i have responsibilities.. she says the surgeon won't even consider me until she can proove 100% that i have it... i am desperate for this surgery man, im only 25 and i cant play with my 2 year old baby because every single thing i do is a trigger, especially the littlest things like swallowing and clearing my throat, you know, things that normal people do without even noticing... I'll go anywhere i have to go to get the help that you got so fast. I cannot do this much longer. I watched the video of the surgery that you posted..
I'll take it. I dont want the pills i just want permanent relief. I emailed his office but nobody ever got back to me... anything you could tell me would be awesome... thanks, Bonnie Coyne