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    Neurospinal stimulator implant and supplemental pain control
    tofucookie posted:
    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.)
    cweinbl responded:
    Many patients with your experience may be victims of the Placebo effect. We try the trial unit. We desperately want it to work. The doctors tell us it will work. So what happens? We think it's helping. Sadly, a few months later, it's not helping any more. That's Placebo Effect. Our brain tricks us into believing it works at first. This is why biofeedback is such a terrific pain management tool. Our brain is a very powerful organ that can be trained to feel or to fight pain. I can reduce my chronic pain by at least 20% with biofeedback alone. Anyway, I'm sorry to hear of your stimuylator failure.

    The other downside to the pain pump and the stimulator is that surgery is required to intall it and to remove it. All surgery entails morbidity.

    Finally, the success rates for the stimulator and the IT pump range from 40% for patients with prior spine surgery to about 60% for those with no surgery. Those are pretty low odds for success. You can read the latest research here:;12;699-802.pdf .

    As for medical marijuana, you can take it legally with a Rx anywhere by tablet. Marinol (Elan Pharmaceuticals) has an active ingredient of THC, the active ingredient in marijuana. Many chronic pain patients obtain significant relief with marijuana. If you want to try it, ask your doctor for a Rx for Marinol. It doesn't work as rapidly when ingested, compared with inhaling it. But, it can work longer and be just as powerful. Although Marinol was designed to treat the nausea and weight loss associated with chemotherapy, many physicians will prescribe it off-label for chronic pain. If it doesn't help, try something else.

    The most powerful and longest lasting medication for chronic pain is Fentanyl Transdermal (Duragesic). This is a patch that lasts from 48 to 72 hours. Unlike oral medications that peak and disappear, the patch maintains a consistent plasma level. Also, because it does not enter the bloodstream via the stomach, it is often much better tolerated.

    Good luck.
    tofucookie replied to cweinbl's response:
    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.
    cweinbl replied to tofucookie's response:
    My father was a physician. So I learned a great deal about the human body and pharmaceuticals from him. As for pain management, I've had chronic pain for more than 40 years, secondary to three wicked disc herniations and four failed spine surgeries. Now, I'm riddled with fibrosis (scarring) from the multiple operations, my spine is fused from L3 to S1, I have massive osteoarthritis, osteophytes (bone spurs), compressed nerve roots and stenosis from bone grinding into bone at L5-S1. I can tolerate no more than 5 minutes of standing or 30 minutes of sitting. I had to retire from my university position at age 51 (7 years ago). My life is horizontal about 98% of the time. Even then, I'm in constant moderate to severe pain.

    I've been to two comprehensive pain management programs and I have tried almost every possible remedy and medication. The most important thing is to keep an open mind. A comprehensive pain management program will offer a TENS, acupuncture, biofeedback, physical therapy, kinesiotherapy, injection of steroids and anesthetics, non-steroidal anti-inflammatories, cortisone, rhyzotomy (radio frequency denervation), spinal cord stimulator, intrathecal infusion pump, off-label medications (anti-depressants, anti-convulsants), combination of long-acting pain medication with breakthrough meds, counseling, hypnosis and meditation. I learned how to reduce my pain with biofeedback.

    Neuropathy often responds to an anti-convulsant. Pharmacologists don't really understand how this works. But it does seem to help. One of the best of these medications Lyrica. A less expensive alternative is Neurontin.

    You should also consider using an anti-depressant (a lower doesage is used for pain than for dpression). Anti-depressants help by inhibiting the reuptake of Seratonin in the bloodstream. Seratonin is one of the body's natural pain fighting chemicals. I've also discovered than one of the older tricyclic anti-depressants, Trazadone (Deseryl) helps me sleep much better at night.

    After more than 40 years of experimentation, I've discovered (and research backs this up) that the best pain management is achieved by using a combination of several different drugs. In addition to the anti-depressant and the anti-convulsant, combining a long-acting and short-acting narcotic is very helpful. The short-acting narcotic is for breakthrough pain. The long-acting narcotic becomes your pain management mainstay. Because it is always in your bloodstream, you avoid the ups and downs associated by only using a short-acting drug.

    You have nothing lose by trying Marinol. Either it will help or it won't. THC is not everyone's cup of tea. Some people feel anxious with it. But so many others experience pain releif that many physicians today prescribe it off-label for chronic pain. Ask your doctor about a trial Rx. If it seems to help, you can gradually raise the dosage.

    If all else fails, there is the intrathecal infusion pump. Like the spinal cord stimulator, surgery is required to install and reove. There is a trial unit worn outside the body temporarily, to see if you are a candidate. But, like the stimulator, Placebo effect can make you believe it's helping when it really isn't.

    Please let me know if you have any other questions or concerns. Good luck!
    An_223013 replied to cweinbl's response:
    thanks for your response. i'm convinced of your knowledge and sad for your pain. it's wonderful that you've an "alternative" lifestyle.... and what else can one call the life of pain riddled people? i will one day soon need to make major adjustments as you have, i'm just doing my best to stave that time off for as long as possible. travelling by any means possible has and always will be my passion and i'm not ready to stop even though something goes wrong on nearly every trip. anyway, i can tell you again that i am on anti-depressants..have been since transplant 11 years ago... and they seem to be doing their job,but NOT when it comes to pain control. i've tried different ones, and the neuro drugs as well as the duragesic, acupuncture, clonazapan, and nearly all else you've mentioned and they either never had good effect, or no longer do. back surgery i've not had, but docs don't want to do cut for various reasons. just want to thank you for all the information, hope you find relief to the extent possible. i will talk about Marinol with docs on next round of appointments in june. you'll hear from me if the outcome is prescribed and has a positive effect! take care, tofucookie
    cweinbl replied to An_223013's response:
    Have you tried Lyrica? It's a fairly new anti-convulsant. It seems to have better properties than Neurontin. It was off-label for chronic pain until the last couple of years, but it targets peripheral neuropathy. Just a thought.

    I also use an anti-depressant for pain (much lower dosage than for depression). It doesn't do much, if anything, for my pain. But it does help me sleep at night. It's Trazadone (Deseryl). Some people today like Cymbalta, because it also appears tohave some pain-fighting properties. It works quite well for my 101-year-old mother. Just another thought.

    Frankly, two of my best pain management tools are: 1) biofeedback and 2) distraction. Biofeedback can reduce my pain by up to 20%. That's not very much. But it is noticeable. Distraction is helpful. During the day, I write novels and at night I watch movies. I get every channel you can imagine and then some. I can also be nicely distracted with some sporting events. Thus, my laptop and my big screen TV are fairly powerful pain management tools. Maybe I can deduct them from my taxes as a medical expense!

    Good luck and hang in there!
    tofucookie replied to cweinbl's response:
    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!
    Skyflier replied to tofucookie's response:
    Why were you denied Marinol? Marijuana offers tremendous relief with neuropathy.The most effective use is by smoking and some plant varieties work better for specific types of pain; but if you can only get Marinol then try that. Go here for information

    I think I understand a little of what you're going through and I wish you the best.
    cweinbl replied to tofucookie's response:

    "Cookie," I'm very sorry to hear about your continued pain and your physician/insurance rejection of Marinol. How frustrating. I would recommend that you obtain THC in any other manner possible. But then I would not want to recommend anything "illegal."

    Too bad about the failure of Lyrica. It might be the most spot-on drug for your condition. May I assume that you have also tried Neurontin?

    Suboxone is an opiate antagonist. Some chronic pain patients report useful results with it, but not many. Frankly, I think that jury is still out on antagonists for chronic pain. Suboxone and other opiate antagonists were not designed to fight pain, but to combat drug addiction and withdrawal. I think that many physicians today recommend it because it is the safe way to stay off a DEA list. Sadly, far too many physicians today are more concerned about the DEA and far to little concerned with managing their patient's chronic pain. How sad.

    Have you tried the Fentanyl Transdermal system? Fentanyl is the most potent pain medication available. The Transdermal system assures that you maintain a consistently high plasma level, while bypassing the stomach and digestive system. The side effects are few and manageable. The dosages range from 12.5 micrograms (yes, micrograms) to 100 mcg patches.

    The only other option I can think of is the intrathecal infusion pump. But, I doubt if you are a candidate. Still, there's no harm in asking.

    Good luck.
    7yearbattlesofar responded:
    I hope that your not comfortable for fear they put the stimulator not in correctly. I have always wondered about those. Hey listen your still taking meds, why not just get a med pump instead, you go in once a month and they fill the meds in the pump and get a little something for breakthru and move on with your life. this is placed in your side/stomach and they fill via needle so no infection can get in and they change it I think every 3-6 months or so...not sure but can ask my friend. He has RSD so bad and a hernia and other problems that if his doctor never suggested the pump to him he probably would be dead today along side his wife. (his wife died right after putting on a fentanyl patch aand was heading to docs office she didnt feel good and she died in his arms on the porch not even out the screen door yet) but this pump has given him some quality of life and he can get around now decent. I was considering a stimulator but even hearing one bad thing, I am Id rather have the pump.

    I would call your doc man and just tell him this is not working for you and you cannot be uncomfortable, t his was the point, for you to finally have some relief...and your not getting any, in fact tell him your getting more pain. He'll get you in...or just walk in and demand to see him. you paid big money for this...dont let him walk on ya. best of luck to you. I am new here so still navigating my way around here. I cant even find my first
    7yearbattlesofar replied to tofucookie's response:
    Tofu,, I dont know your what is going on and reallyhave not been able to figure out how to navigate this place yet, but can you tell me whats going on with you? Savella, Lyrica, make me think you have Fibromyalgia. Do you have any autoimmune illness? Back issues? Joint pain? Dr. Arthuritises?

    So in the state of MT. 13 meds for 5 yrs. Lyrica-puffer fish with cankles, savella? what did I take that? I didnt know it did anything. Plaquenil for 5 years? not much of anything nd whole bunch of other meds on and off, try this , get rid of it, i gain weight well we cant have that, was hit or miss ith me for 5 yrs at the same PC. lots of docs who all had heir own opinions about my care

    My new doc this time since my separation and living in Cali for the time i did, a PCP doctor who really cares and looks at every symptom, very thourough with his exam and note taking, and LISTENS TO ME, i cant tell you how that makes me feel , this is why I love him and hate to have to give him up but cant keep flying out there. Anyhow...he has me on a combination of Lamictal, prozac, klonopin, flexeril as needed and it has settled me down. I dont know if its the combo but its working for me right now and has been about 3 months knock on wood. I also take methadone for pain 60mgs a day. I do need something for breakthru but he is kind of reluctant because he knows how many different meds I have been on and have actually become hyperalgesic from some of the short acting and really he's right, we are trying to make a go of this with as little meds as possible. For my fatigue he gives me a small dose of Provigil (which they give to Narcolepsy patients and are actually using it for persons who had cocaine and speed addictions) but I have such bad sleep apnea with hypoxia that it really helps with the 20mgs of prozac I take to help me stay awake all day and try to get on some sort of regular sleep schedule so I dont sleep 15 hours a day cuz I would. I take Cartia, Clonodine, Klonopin, Provigil, Methadone, Flexeril (gives me 30 a month, I use like 10-morninngss are my most stiff times and hard parts of the day), prozac, Lamictal, Lasiix for when I swell up and get those cankles now and again and I have some pills left over from the old pain doc before I left for Cali so if I need one of those on the real bad days I have them...Morph 30mgs long acting. I hardly take them tho....for emergency use only. I have not battled this for 7 years and not learned all the tricks to the trade..LOL Currently I am looking for a new reputable pain doc in my state and I hope the one I sent my records to will accept me. Why am I talking about me??????????? I do that sometimes, just smack me ok?

    Do you like being on methadone? Can you stay on that? Its long acting, few side effects, safe if your not opiate naive and you take properly and keep a heallthy fear of it....your getting it prescribed out patient and dont have to use a clinic to get it because of docs not prescribing it as much as before when all the deaths happened once kids got a hold of it and were taking doses of it being opie naive. Methadone for me has been the best long acting pain reliever for me due to all my illness and back pain and head pain. To add to the injury I already had going I was nailed by a drunk driver with my son 11 miles from home after a 3 day drive from chicago to Montana by a drunk driver with no ins. I was on methadone 60mgs and 120mgs of Roxicodone for breakthru. that was 5 years...kicked that to re-asses pain, went on Norco for a year, which was utter hell but I was moving all over the place and was not settled,moved to rockys and doc put me on Opana first,, then i could not afford that with no script coverage so he put me on dilaudid and moriphine I got 8 8mg dilaudids for breakthru pain a day and I was on 120mg of Moriphine long acting so 4 30's a day till I got sick and tired of just being handed pain pills and getting no help.
    7yearbattlesofar replied to 7yearbattlesofar's response:
    I wanted to also say one thing about methadone. When you find the right dose for you, you dont have to constantly change your dose because of tolerance. You get to a dose where it manages your pain add a little breakthru if you need it but in the 5 years in Montana I stayed at the same Roxi dose and methadone dose the entire time and I kicked the two by myself and just tapered myself down. I kicked Roxi first and then tapered my 2 months of methadone I had all the way down to two and half milligrams and then jumped. Went on Norco after a month being off all meds due to pain and having to raise a chilld but at least I keep my pain meds at a minimum because i didnt want to become an addict and I knew if i kept on and thinking my meds were not working, my healh records allowed for more than 10/325 norco 4 pills a day. So I stayed and suffered at that for a year then found the shmo out here with the dilaudid and morphs, and now my doc in Cali and hopefully the one I just sent my whole life to. otherwise its cali every month. i wont give him up ill find a way to make it work. but please I wished I saw more patient determined about what they think they deserve from their doctors and what kind of level of care no matter your insurance,medicare, medicaid or nnone for that matter. they are your clients.....its much nicer when you hold the deck. just demand whhat you want and if he isnnt gonna give it to ya, tell him he's takin it out for free and you will get it done elsewhere. i tend to get bitchy when it comes to hard earned money going to doctors who think they can play g-d with your life. We are the little guys who worked our asses off breaking every g-d dam bone in our bodies so they can party in the hamptons? live on an island? (new york) have offices the size of a 3 bedroom 2500 sq ft home? No. Well you know..i think i really did take this a bit too far here but I get so angry and with all the personal stuft going on at my home (and you will know one day how Ii got to here and why im kind of angry psycho, I really needed a vent and hearing about your doc just took me off and running. I apologize for being such a Just do whats right and stick to your guns ok? Best of luck to you. sorry again for my rant....guess I should have been 7yearsofpsychobabbleandpainclinics.. take care.
    cweinbl replied to tofucookie's response:
    I recommend some mind-body techniques, such as biofeedback, Yoga, systematic relaxation, meditation, etc. Add to that the specific combination of medications that best for your unique body chemistry. Unfortunately, the only way to determine that is to try many, many options. That requires a very liberal and compassionate physician. Many PM docs will allow you to try this, although it can take literally years to determine. But it's very important. Some pain patients respond very well to off-label drugs, such as sedatives, anti-convulsants, anti-depressants, muscle relaxers; and the afore-mentioned intoxicating weed (THC). The IT pump for peripheral neuropathy sounds like a mismatch, but it's worth asking about. Again, it would be important to have terrific success with the trial unit before having it surgically implanted.
    tofucookie replied to Skyflier's response:
    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. (???)
    tofucookie replied to 7yearbattlesofar's response:
    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.

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