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    Old 11-28-2004, 09:47 AM   #1
    toelle's Avatar
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    Unhappy Have date for nerve root stimulator

    Please anyone who has had the eletronic nerve root stimulator done let me know of your experiences good and bad. I've been told by my pain Dr. that this is the end of the road for me and my pain. I'm just so scared it's not going to work and then what will I do? Be on drugs for the rest of my life? I know I should be grateful that I can lead a fairly normal life, walk sit for a short time go out, be with friends but it's only because of the Lortabs and the Xnax and I'm so worried about what they are doing to my body. I was on the back problems site and got a couple of bad reports about the electronic stimulator so now I'm really worried weather mine will be a sucess. Please anyone with any info on this let me know. Toelle

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    Old 11-28-2004, 02:52 PM   #2
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    Re: Have date for nerve root stimulator

    Hi Toelle, I'm assuming you have a date set fioot a trial. of the stim, where temp implants are made and you have an external stimulkator. YOu get some time to play with the setting and try to achieve 50% or better reduction in pain and it's called a succesful trial. But just reading your post, the meds your on, Lortab and xanax to an impanted spinal cord stim is a huge leap, to go from the very begining and most basic pain mnagement to the last resort doesn't make sense.

    Nothing is a cure all, even implanted pumps cranked as high as possible with the most potent meds doesn't gaurentee anything. I'm praying your talking about doing a trial and not just implanting a stim and hoping for the best. NO trial, no stim or pump because there are no gaurentees with anything.

    If your doc see it as the end of the line and you haven't done much in between Lortab and an SCS it doesn't make sense to even think it's the end of the line yet. It's more likely the only thing your doc knows to do, but doesn't mean it's the only thing out there or other docs won't have dozens of things to offer.

    Can you tell us more about your pain, surgeries, procedures and what you have tried, med wise and procedure wise, Anticonvulsants? Antidepressants, topicals, nerve blocks, med infusions, TINS, TENS. If your doc only prescribed Lortab and xanax and when that doesn't work, if the only thother thing he knows to do is implanting a nuero stim device, your missing out on a whole world of pain management and interventional procedures and modaliyties .

    Every doc , surgeon, PM doc and clinic will have a different Idea of what should be tried and what shouldn't, what they think works and what doesn't, whether opiates help or they don't. Whether long acting opiates are apropriate or not. But there are certainly much much stronger meds that can be tried for nerve pain, Yes nerve pain doesn't reposnd as well to opiates but the idea that there isn't any point in adjusting a dose of long acting meds upwards untill it helps or the side effects hinder you more than the pain. Then you are no where near the end of the line. Your simply at the end of the doc your presently seeing, ability to help you.

    I saw at least a dozen PM docs, went through 3 PM clinics , 8 hours a day 5 days a week , for 4 weeks, did work hardening, and had 3 surgeries and more PT than I can think of, before I found a doc that was able to manage my pain. I can't tell you how many times I was told you just have to live with it or it's in your head, Or we don't use pain meds or you need to be detoxed simply for asking for pain meds.

    I ceratinly wouldn't let one or a half dozen docs condem me to a life of pain, a stim that by design is only expected to reduce your pain by half. But that doesn't mean because you have a stim, you can't continue to try other treatments. If you don't feel you have had a fair shot at managing your pain with other methods, The stim is a big jump. There are many docs that once they implant a pump or SCS that believe that's it, nothing else can be done. That's entirely the wrong attitude going in. The stim or pump is nothing more than one of the tools a PM doc has access too. It doesn't prevent you from trying other methods and there is no reason to jump to something as invasive if something less invasive can be used.

    Please tell us more about what you have tried and your condition before going with a doc that believes this is the end of the line.

    There are pain meds a hundred times stronger than lortab, there are adjunct meds that can be used to increase the effectiveness of pain meds on nerve pain. Some meds are better suited to neuro pain.

    Have you done research on Neuropathic pain and ytour options. Have you tried NMDA receptor blockers, LIke methadone, Nemanda, Dextromathorphan, Ketamine.
    Please read this article and think about whether you have actually traveled that much of the road to determin ethis is your last and only option. As muuch as you may apreciate the little rrelief he has tried to give you with Lortab, is he witholding stronger meds because thay don't work on you, regardless of dose, Ore because he simply doesn't prescribe anything stronger.

    Many docs try to jam every square patient through the same round hole when they don't know or have the experience or only have one trick up your sleeve before going to something as invasive as an SCS. I could ramble off 30 different methods i have personally tried. I presently havea morphine pump, but I'm hardly at the end of the road. As long as your still willing to try things to improve your quality of life your not at the end of the road. Only you can decide when you are at the end of the road and tired of trying things that may or may not help. PM is trial and error for everyone. If you can't name 200 other things you have tried, then you aren't at the end of the line. But a multifaceted aproach to PM is certainly going to work better than a couple tries and saying that's all there is to offer.

    Pumps and Stims are just tools, thats all. Not cure alls and not the end of the line or the best you can ever hope for.

    Good luck and I hope I have sparked your curiosity iof you have only been dealing with a surgeon or 1 PM doc who uses Lortab and when that doesn't work, does another 30K surgery and implants a SCS and tells you this is your only option. It's not!!!!
    Take care, Dave

    Old 11-29-2004, 06:16 PM   #3
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    Re: Have date for nerve root stimulator

    Dave said it perfectly. There is no reason to go from Lortab straight into the stimulator. I would be willing to bet your doctor is opioid phobic. Get a second opinion.....there are lots of meds stronger than lortab.

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    Old 12-09-2004, 04:34 AM   #4
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    Re: Have date for nerve root stimulator

    I may have just joined, but you gave me chills. Me friend had two stims put in and neither worked and it sounds like she tried alot more things than you have. Think very carefully! Get a second and third opinion!

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    Old 12-09-2004, 11:36 AM   #5
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    Re: Have date for nerve root stimulator

    Hi Toelle, I was just reading what I wrote while in the mountains. I saw a few errors , I meant to say if you haven't tried more than 20, not 200. methods of pain management you haven't rally been exposed to much.
    200 would be a bit over the top, But there are so many options and from what you described it doesn't sound like you have had the opportunity to really get more than couple opinions about treating your pain or a couple methods to try and manage it..

    As far as meds, yes, they are a hassle, but needing a medication to function doesn't make you an addict.Personally I prefer t walk and not be bed ridden and take the meds I need to function. Addicts use meds for reasons other than pain and addiction destroys quality of life. If medication used to treat CP improves the quality of your life that hardly meets the criteria of addiction.

    You may run into a doc that doesn't believe in the use opiate medication, but that's just his opinion. Ignorance of what addiction is and what simple physical dependence is just continues the stigma and misinformation regarding opiate pain medication. They use the term withdrawal for what you experience when discontinuing opiates or other illegal drugs. If you have a negative experience discontinuing antidepressants, steroids, and many other drugs, the medical community calls it abstinence syndrome.

    Both words mean the same thing. But by using the term withdrawal, it adds that negative connotation of opiates and drugs of abuse and addiction. The only purpose of creating a separate word for the same experience "abstinence syndrome" is to continue to attach the negative stigma of using opiate pain medication and is very intentional. Like using the word Narcotic pain meds. Narcotic is a term used to describe an illegal drug, why use it on a legally prescribed medication used to easeto ease suffering and improve someone quality of life.

    When you say you are concerned about what the meds may be doing to your body, opiates alone, used properly don't cause any internal organ damage or irreversible cognitive impairment. In most cases the feeling of impairment diminishes very rapidly, just like any feeling of euphoria an addict may chase by abusing the same meds that restore quality of life for many people. The difference is that people who abuse these meds must continually increase the dose to obtain whatever buzz or feeling they are looking for or psyche feeling they are trying to escape.

    With addiction safety isn't an issue, How could you inject some crud whether it's heroin with who knows what in it, or Oxycontin with titanium dioxide, talc, and a host of fillers that can't be removed and cause abscess after every injection. You would think having a few open abscesses would snap someone out of behavior that's so destructive. But no matter how much damage drugs do to someone's life, an active addict isn't going to recognize or acknowledge it, even when it costs them their job, their home, their family until they hit rock bottom or it kills them. That's what addiction is, It's not complicated, bottom line is it's destructive behavior regardless of the consequences.

    Meds that cause physical dependency or abstinence syndrome when stopped abruptly, that are used in pain management, Don't do internal organ damage. that's a fact. Tylenol and Ibuprofen do more damage than pure opiate pain meds. 100,000 people every year are hospitalized from OTC pan meds and 17,000 die each year from kidney damage. liver damage or gastric bleads. Opiates cause non of these things.

    This is why PM docs that see the benefit, and monitor the benefit of opiates are comfortable using them. If the meds you need to have some quality of life, improve your quality of life, That directly opposes every description of addiction you will ever read.

    Even with such a clear distinction between addiction and physical dependence, there are docs that can't seem to separate the two. Addiction and improper abuse of pain meds and Pain management using pain meds as prescribed to improve someone's quality of life.

    Addicts can be very cleaver and con docs into prescribing , they do slip through the cracks in pain management. There is a small population of people that probably legitimately could benefit from long acting opiate pain meds that don't contain harmful drugs like Tylenol and Ibuprofen that have addictive personalities or that have unrealistic expectations looking to obliterate any and all pain and do abuse meds prescribed by a PM docs.

    I know there are people that have several sources for meds and they use a months worth of meds from one PM doc in 10 days, then find another doc and then order pain meds from the internet and buy them off the street. But a few bad apples don't make an entire class of medication designed to ease suffering something so evil that docs can't distinguish between benefit and addiction. A doc that can see the difference isn't worth the time to try to enlighten.

    People, maybe friends or family are feeding off this mis information from opiate phobic docs that are very narrow minded and refuse to recognize the difference. These people don't know the difference that may be suggesting you have to get off these meds before you become addicted. They are basically saying, better stop before you your unable to make a 30 day supply last 30 days and start doc shopping, altering and forging prescriptions and calling your own scripts to the pharmacy. You may even become crazed and rob a drug store with a shotgun? Have you ever ordered Pain meds from the internet or altered a prescription, do you drink on top of the meds to get high?

    It's sounds pretty foolish when your simply taking a med so you can function and have never done anything wrong. Why do we have to pay the price of a few people that can't control their actions and make those choices.

    It's a shame that people think that because a small percentage of the population does these things. Anyone exposed to meds that cause physical dependence and abstinence syndrome, is going to turn into a some criminal drug addict scouring the streets at 3am to find just one morphine pill or one Dilaudid tablet to get through the night is the most ridiculous statement and based on no medical fact. I've even had a dental receptionist give me the speech about how powerful and addicting vicodin is. This is after 3 back surgeries and meds so much stronger than the 8 vicodin the dentist prescribed for an extraction, but she was convinced those 8 pills somehow had the ability to turn me into a drug addict and loose my mind.

    When you continue to use opiates as prescribed in a safe manner, there are trades, like physical dependence, but only you can decide if you can live with "helpful advice from well meaning but uninformed friends." or continue to do what you need to function. You do have choices regardless of what is causing your pain. The only thing that limits your choices are sticking with a doc that doesn't know what else to do or is opiate phobic.

    Thinking everyone in pain can learn to live with it and suck it up is as ridiculous as thinking every infection can be cured by Penecillan. What works for one may not another. Treating a disease is as much trial and error as treating chronic pain, only you have more options treating CP than there are antibiotics.
    Good luck, Dave

    Old 01-21-2012, 03:01 AM   #6
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    Re: Have date for nerve root stimulator

    My father(whom i spend countless hours and time with) Had the 7 day trial of this new technology and honestly nothing better has happened to him. The trial has already been taken out and he is now awaiting an appointment with a neurosurgeon to be paraded around till the permanent one is put in. He has been on pain meds with multiple back surgeries, suffering from(just a few problems)Degenerative disk disease, osteoarthritis, spinal stinosis, and many other problems including nerve damage. I join this site to reply to this. I hope your experiences are as great as his. The only painful part is getting the trial put in as they can't put you out for it. :/ But it was amazing. With love- Defilade.

    Old 01-23-2012, 03:10 AM   #7
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    Re: Have date for nerve root stimulator

    I had a spinal stim implanted in Jan of 2011 after a successful trial in Nov of 2010. The trial period was GREAT except for the wires protruding from my back, which made for some difficult sleeping (I just ended up taping them down). After the trial had ended I told the doc that I definately want it, took my lower back pain from a 8 to about a 4.

    The spinal stim, I was told at the time, was my only other option to reduce the pain, as I was not a candidate for further surgery (Had an ALIF on my L5-S1 in Jun 2009).

    The implant went in and ever since, the leg pain has reduced dramatically, but the lower back pain is STILL strongly there, and it seems to radiate higher than it did prior to the implant..I know for sure that all lumbar disks came back in pain on my most recent diskogram (to include the one between the lowest thoracic and L1).

    The implant went in around the T8 level, the battery/control pack was implanted on my right hip. I do regret getting it...since the only pain relief I get is in my legs, and for that invasive of a procedure...but...anything in the name of science and the hope of pain relief.

    One more thing I forgot to mention...once you get one implanted, you will not be able to undergo any further MRI or Magnetic testing, or go through metal detectors without setting them get a card that states as much...lets just say its fun to fly with one of get pulled to one of the "special" rooms

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