G'Day,
Haven't written here since 2010 summer after my 2nd Gamma Knife procedure. It exacerbated the pains, and I ended up in the ER 3 days later, and was admitted for 13 days...am still not sure why, as they did so little to help and so much to hurt! I begged all Drs. to let me go home, but I was a curiosity condition and a good training tool. The pain continued for the next 3 months and no prescribed combo of meds seemed to help, so self medicated myself to a zombie status and lived with my son whose main duty was to check that I functioned(I did) and to try to feed me...usually just 2 bits a day of soups/custards/energy drinks/Activa and applesauce. I did lose nearly 20lbs in hospital and in the following months, but managed to put back half the weight since. It didn't help that I now had a new problem....night terrors of bizarre reality and horrible dreams, which occurred almost daily, which intensified the pain, and started in the hospital after a nurse gave me 2 Ambien and Morphine together.?? Within hours, I was searching my room for a bomb, and accused anyone and everyone of wanting me to explode. The bombs were the main theme of every night terror, and many times I was awake looking at people, but couldn't talk
Now for the ever-so-good news!! I kept a journal(almost hourly) full of my pain levels/med times/nurtition taken/night terrors/visitors conversation and I recorded that my last actual pain eas on October 1st, 2010 and the last night terror was October 6th, 2010. I quit all meds cold turkey on October 17th, had a few days of withdrawal shakes...nothing I couldn't handle, and was driving my car again and going shopping within a few more days, and actually phoning friends was a major step as, I hadn't been able to talk coherently or at all so much of those 3 months. By December 1st the numbness had started and gradually has affected the entire left side of my face. I feel like it's frozen cold, I feel no sensation of dribbling or drool, and I hate the slight tickling feeling of wind or rain, and my taste buds don't exist on the left side, my left eye feels like it's constantly watering or gushing tears and my left nostril doesn't seem to "breathe". I am fine, my vision is great, and I'm really breathing normally!
THERE IS NO PAIN!! My face looks perfectly fine, nobody can detect anything but the occasional dribble of marinara sauce or coffee, and there are certain things I can taste. Thai flavorings, ginger, curry paste and almond are the ones that come to mind first. I went back to Australia for a few months earlier this year, and all was great....didn't even take any left-over meds with me! I have a new job, my neuro-surgeon saw me last in May and cannot predict if there will be a TN recurrence, as I had a very strong dose on that 2nd Gamma Knife, but he's there if I need him. So there is my update...I am so happy to be free of the horrible pain, and am enjoying my family and friends, my dog, my home and my job.