For the past three years, since I had a poorly executed wisdom tooth extraction, that hurt and bled for so long I returned to the dentist office each day weeping in pain and fright, I have been in constant, horrible pain. I was diagnosed as having Geniculate Neuralgia a year and a half ago. One cause is a bad tooth extraction, though you will not find a doctor willing to say this out loud, as that would lead to many lawsuits.
Almost exactly a year ago I underwent what was meant to be a microvascular decompression surgery, which in simple terms means the nerve that causes me constant pain would be given it’s own little straightjacket and a strict lecture on behaving itself. At least that’s how I picture it! In actuality my nervus intermedius should have been wrapped with a Teflon pad, but it was not. My neurosurgeon was unable to “see” the damage, so he massaged my nerve and sent me on my way-after four days in the hospital where I had to learn to eat and walk again, with the aid of a walker.
Fast forward a year and I receive the news I already knew in my heart to be true, since the moment I woke up from brain surgery and learned nothing was done. Massaging the nerve did nothing to eliminate the pain, nor is there any reasonable way it could have. Much like getting a body massage-it may help your muscles loosen and your body feel somewhat better for a day or two, but it would be silly to think a massage would help your body be free of it’s painful knots, kinks and injuries for a year or more.
Due to this rare disorder, I have I’ve undergone 4 MRI’s. Yesterday the MRI I underwent was the worst. Despite three levels of padding over my ears, and the technician being kind enough to turn on my favorite radio station, the sounds from the machine were so incredibly loud and intense, that the normal stabbing pain I feel in my right ear was amplified by a thousand, and each noise felt like a vicious attack upon my ear. I could feel the sounds invisibly pierce the wounded nerve deep in my right ear, and it took all my strength not to squeeze the panic button I was given. The music I like only made it into my ears during the brief moments of silence from the giant, horrible sounds made by the MRI machine. The pain made me shake, all the way home, and made me feel physically ill. I kept thinking that if the neurosurgeon does not see any damage with this MRI I am never, ever getting an MRI done again unless I am knocked out first! I tried meditating, concentrating on my breathing, anything to calm down, but nothing could help me escape the assault of noise and pain from the MRI machine.
With serendipitous timing, I was due to pick up a new medication after the horrible MRI was over. None of my specialists have told me of this med, but on the only forum dedicated to people that suffer from Geniculate Neuralgia like I do, or it’s nasty big brother Trigeminal Neuralgia, someone had written the magic words, “When I take this medicine my ear pain just stops,” I have taken over 15 medications for three years, use essential oils daily, which bring the roaring pain in my ear and head down to a less aggressive roar, and am learning meditation and biofeedback. I have never heard anyone with my disorder state that something stopped their pain- even the brain surgery I may undergo a second time, or the more dangerous surgery that cuts the offending nerve completely do not stop the pain completely. Thank goodness my one and only doctor left agreed to write me a prescription for this new medication.
I should preface the next sentence by saying I have a very high tolerance for medication since I have taken many, many medications since becoming an adult. I’ve suffered from postpartum depression, severe depression, panic attacks and pain related to my mild cerebral palsy, just to name a few of the instances that called for medications to be prescribed. There are few medications I have not tried at some point. Since I have been on pain medications for so long they do not work well on my constant pain any longer. Last night I took the first, lowest dose of the new med. I cannot say with any certainty that it worked, but it did allow me to sleep, uninterrupted by spikes of pain that usually wake me many times a night,, for the first time in three years, That in itself is a miracle! I’m afraid to get my hopes up too high though. I had my hopes up before the first brain surgery, before the Botox, nerve blocks, second surgery to cut an adjacent nerve, on and on. Despite this though, there is a small glimmer of hope in my mind today. Maybe, just maybe this medication-made specifically for neuropathy and neuralgia, will help me. With luck perhaps I can get back to my life, that I’ve become a ghost in these last three really hard years. I don’t want to get my hopes up, but truthfully I already have. My ear hurts like h–l this morning, but last night I slept, all night, so it eased the pain for awhile. Maybe it will help, long enough at least, until the next brain surgery. Here’s to not giving up and to crossing my fingers that this medication eases some of my horrific pain, so I can get back to playing with my kids, cooking, reading, creating natural beauty and body products and perhaps, even being up to walking through our half acre to care for chickens I’ve been unable to help with, since all my time has gone to trying to care for myself, and ultimately laying down in bed because I hurt to much to see straight. Maybe, just maybe this medication will ease the pain enough that I can start living again.