appreciate your response and wish there was something in the pipeline top eradicate this epedemic of chronic pain. so many people are living their lives in pain, its very sad that research has not come up with some new tools. i would like to ask you about the removal of your implant. i've have this one in for around 4 years with it turned to the OFF position after the first 6i months of adjustments without effect. i've been told that it is more harmful to take it out than to leave it in and not turning n on. if that's true, i'm really interested in knowing why your doctors removed it. was it causing another issue besides not bringing relief. was there more to it besides it not working? i've considered a morphine pump inputs, but the "best" doctor performing this procedure tells me i have to be OFF all pain meds for roughly 4 weeks prior to the trial. i know that this makes sense as far as testing goes, but i cannot see myself doing that. i've been through the gamut and have found Exalgo to control the pain most of the time but in increasing doses that i'm sure can't continue increasing indefinitely. thanks for telling me your experience. i hope your have found relief with another therapy.. hope to hear more about cause for stimulator removal,View Thread
good to hear from you. i've not checked this site for a while. took a long vacation overseas and, as expected, am now paying the price physically. developed lymphedema, cellulitis, very painful legs plus experiencing (then and now) adverse psycho reaction to the newest anti-depressant miracle drug, Viibryd. because lymphedema treatment consists of lymphatic massage and wrapping legs to big fat cigars, mobility is limited, however, because of this, so is the neuropathic pain; i understand that the fibrosis from lymphedema can provide a cushion between skin and nerves, thereby reducing pain. another irony. i think i'll keep up with the lymphedema treatment regardless. local pain management doc wants to try some type of electrical stimulation next time i come in. but, i've become such a sceptic, i'm not racing to his office. surgeon who implanted the NSS has offered conversation re morphine pump. for the time being a break in pain means a break in doctor visits. when the lymphedema is under control and the viibryd is out of my system i'll consider another guinea pig status. yikes, i'm a human toxic dump! i'll have to look up IT pump.... i already don't like the "surgically implanted" part. thanks again for your input. where do you find those liberal and compassionate physicians to whom you refer? i have a few specialists that fall in that category, but none is the pain management or primary care category. you are absolutely correct re yoga and relaxation. hope your are feeling as well as possible.View Thread
lots of issues with me, but the major pain issue is peripheral neuropathy resulting from toxic poisoning by cyclosporine. am familiar with and have been prescribed the drugs you mentioned. NSS was the "big hope." currently spinal injections to the sympathetic nervous system have provided decent results 50% of the time, but their use is limited due to their steroid content. that and methodone make walking bearable if i take it easy. good luck to you. do i like methadone? well, i've had the least adverse side effects to it. you know, i say "good luck" because, the more i think about it, that maybe a large part of finding the right pain control.View Thread
thanks for your input. that is both sad and scarey that fentanyl caused the death of your friend's wife. i tried it and stopped it a few years back.... can't remember what the adverse effect was. seeing the docs is no problem... trusting their judgement and skills after years of failures IS a problem.View Thread
yes, pain mgmt doc was SHOCKED. he was not familiar w/marinol, looked it up, returned to the examining room exclaiming "THAT'S MARIJUANA!" informed me that he would not prescribe such a drug, didn't know any doc who would, etc., etc., after that conversation, i was given a cup to take to the ladies' room. geeze. with those attitudes, what's the use? marinal would be the choice for me due to my living thanks to a transplanted lung. doubt smoking would be a good idea, even if i could get it. btw, a friend of mine is now sitting behind bars for growing his own for pain control. yep, a really dangerous guy in his sixties growing a couple plants to control pain that docs could not. (???)View Thread
since last post: i've been denied Marinol, experienced miserable failure with savella, have been refered to another doc who can prescribe suboxine. appts not til months from now, however, talking with suboxine doc on phone, he doubts it is for me (and i sure can understand why) and makes no sense. so, right now im between pain docs... i think my current one has thrown up his hands with his suboxine referal.... and will see what's next in a couple of months. in the meantime persisit with methadone that at least provides SOME reflief. lyrica was one of the first i tried about 5 years ago and it became ineffective, cymbalta made me literally insane and did not help pain at all. (toldja i've tried everything except what has not yet been released or legalized.) NSS sure is a bust! guess you're right on that one. oh, one thing, pain is manageable for staying at home and having a decent life, however, i love to travel internationally, locally, ANYWHERE, and my mind is not yet ready to give that up. i.e., plan a lengthy trip overseas later this summer, and i'm going unless someone ties me down. after that, if nothing else has been successful in significant pain reduction, i'll just have to rethink how i will lead my life. i can adapt.
thanks for your input and take care. i'll be sure to post if something significant comes along. now i'm off to neurologist and transplant clinic! good luck to you, too!View Thread
cw??, thanks for your reply. as you are the ONLY one i received it says a a bit about the options remaining available and the relative futility of finding one that works. (btw, i have tried the fentanyl patch most recently prior to NSS, but it brought no relief, either.) i hate to believe i "duped" myself into believing the stimulator brought significant relief initially... would love to get that back! i will speak with my pain management doctor and my neurologist regarding the Marinol. i am surprised that none of the medical professionals on my extensive list even hinted at your possible alternative. which, naturally, leads me to ask what your background is. do you mind filling me in? again, thank you for your reply, and i will check into it. tofucookieView Thread
hi, folks i'm new to this site but long-time acquainted with chronic pain. my peripheral neuropathy is a by-product of an anti-rejection drug i took for a few years about 11 years ago for a lung transplant. after years of every type of pain control treatment possible, i finally got a NSS implant last november 2010. the trial worked unbelievably well. rejoiced at the possibility of a pain-free walkable life again!
however, after 4 months on the stimulator, several adjustments, and methadone 3 times a day for supplemental relief, i feel as though i'm back to square one. feet swell quickly, stinging/burning is apparent from the moment i wake up and walking is again very painful. my neurosurgeon is aware of my disappointment and advised me to continue as is for at least 6 months more.
needless to say, this is very dis-heartening. have any of you had a similar experience to mine, and what is the outcome. DOES the stimulator's pain relief improve as time passes? (btw, the leads have not shifted out of place), supplemental drugs taken? stimulator explanted? next option? any helpful information would be appreciated.
thank you so much. (someone suggested medical marijuana, but its illegal in this state and i doubt jail would improve my quality of life.) tofucookieView Thread
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