Fist, thanks to all who wrote me after surgery was cancelled for my GN in Pittsburgh. I don't have regular computer access until home on Wednesday, so I will write each of you then.
Do any of you have an opiod pain pump implanted in your neck or beneath your brain? This has been presented to me as a possible option to pursue when I return home, and I was hoping to learn more about it from others' personal experiences ahead of time. My pain meds are not helping and Tegretol had to be lowered from 9 pills a day to two due to it causes my liver to become toxic.
I am still feeling hopeless and in so much pain. I \t breaks my heart to think of family, friends and strangers who donated money to get me to Pittsburgh on the promise of a 60% successful surgery, bu cutting the nervus intermedius, which was called off a day before, after flying here, because my Geniculate Neuralgia pain is always terrible and it started shortly after very poorly done wisdom tooth extraction. The opiod pain pump was the only suggestion that the pain management doctor said is worth trying. If you know more about it or have one yourself, please advise. Thank you!
I went to a neuro yesterday who described to me that the brain manages pain in a “use it or lose it” way, so that neurological pain will be worse if painkillers are involved, because the brain literally loses the (however poor) pain numbing function. Makes sense to me. The day after I take codeine I seem to be really bad pain wise. She explaines this in detail, and that opioids should therefore never be involved with neurological pain.
You may want to discuss this with a properly trained neurologist in addition to the pain management doctor. Whatever you do, Don’t make it worse!
I switched from Fentanyl patches to Methadone in addition to Nortryptyline and am also getting Botox injections and that between the 3 it has taken the edge off the pain and I am much more functional. Sorry you are in such a predicament - pain takes all it can out of you.
i too wold like to hear from someone with tn/gn/gpn who has had pain pump. i assume it's rarely done for these conditions because opiods only help a minority of people. a few opiods have helped me and the effect is dramatic. restores some functioning. but i become tolerant quickly or develop significant side effects.
have you had some success with opiods? if yes may be worth investigating. they do a trial first to see if you are a good candidate. i'm sorry for your pain and hopelessness. i can relate to both. i have gpn and i'm in tremendous pain 24/7. i've had 3 cranial surgeries, most recently a motor cortex stimulator.
rueann have you pursued further. if so i hope you'll share. i wish you all the best!