Powering throug.......?

I was diagnosed with GPN about 4 years ago, although I've suffered with it for more than 10 years. Ron posted all my symptoms just a couple of days ago, from the weird sore throat, the bouts of occipital neuralgia, the poker in the ear, etc. I even had my tonsils out at age 50 because it was believed that was the culprit.

Over the years, I've had brief remissions. BRIEF.........and then it would come back. I ended up on morphine after the anti-seizure meds stopped working. I stopped the morphine over a year ago, and now I'm down to a periodic vicodin which helps a little, for a little while.

As time has gone on, the pain and symptoms have changed dramatically. A neurosurgeon at House Ear Clinic in LA said the ongoing compression of the nerve (mine was confirmed by an MRI) can cause the pain to go from neuralgia to neuropathy. My pain - most recently - has just been a chronic, dull, aching, deep pain, mostly in my ear, but also in the throat and neck.

WELL, I THINK I'M IN A REMISSION......I've been sort of pain free for about 3 months. I only have twinges now and then, but I have a VERY, VERY sour taste on the posterior 1/3of my tongue on the right side - the bad side.

So here's the discussion topic: Do you think that I've powered through this disorder? If the nerve can cause neuralgia, and then neuropathy because it's so damaged for so long, do you think it can sort of burn itself out? Sort of like a gamma knife, but without a doctor's visit?


Would love your thoughts!

All the best,

Nikki D

Hi Nikki , iv beensuffering with this awfull condition since about 2006 ,

I had MVD surgery in April 2010 i was found to have a compression by a main artery , this was packed by teflon

not a great surgery to go through but the pain was so bad in my ear mainly that they could of removed my head i didnt care , sadley this didnt work and i was also left with Left vocal cord palsy . I hade further MVD surgery on the 25th Jan 2011 as my surgeon thought maybe the teflon had moved as he had no answers as to why i still had such pain , it turns out everything was how he left it so its a case now that the nerve is damaged , he is totally against cutting the nerve as i have read before as he said you can still suffer a pain and you can suffer like a person who loses a limb but still feel the pain in it . So i dont think we will be going down that route . I have also in the last 2/3 weeks a swelling in the surgical scar area , told i now have CSF leak been told by hosp not to worry awaiting Ct scan any day now and hope to see my own surgeon soon after. If it is possable for the condition to say burn it self out i hope and pray for you this is the case , mine has been compressed all my life and the constant pulse of the vessel over the years has damaged the nerve, Strange isnt it that it didnt show its self till i was in my 40,s. i had surgery on my throat by having some collegene injected to move my vocal cord over so the other isnt so strained has helped the swollowing working on the tone of my voice have to get it stronger as im cabin crew cant fly (well work ) with a voice that comes and goes also now have leakage so they wont let me fly at all , the wonders of GPN , this condition can take over your life .