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  • Neuro Stimulator for Peripheral Neuropathy??

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    Old 05-17-2014, 05:46 AM   #1
    Vinegar
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    Red face Neuro Stimulator for Peripheral Neuropathy??

    A Pain doctor is pushing me towards a neuro stimulator for my neuropathy. Although not as invasive as surgery, this still scares the crap out of me.

    Has anyone done this and does it work?

    Previously I had been treated with oxycodone and lyrica with success, however this doctor does not believe this is effective.

     
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    Old 05-17-2014, 03:29 PM   #2
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    Re: Neuro Stimulator for Peripheral Neuropathy??

    Hi Vinegar :-)

    I have no experience with neurostimulation, but one of my brothers-in-law has been using it for chronic post-surgical back pain for a little over a year. Having previously relied on opiates for pain relief -gradually moving "up" from hydrocodone to oxycontin as the need increased- he swears by his neurostimulator.

    The device was inserted subcutaneously on an outpatient basis in the vicinity of his upper right buttock, and there were no complications beyond learning how to control the "dosage" via his controller. The initial programming of the device was accomplished by the doctor's staff on the same day as the implantation procedure, and it hasn't since required changes. (And even if changes were required, they would be done without further surgery... just a reprogramming of the control device by a technician in the doctor's office.)

    He told me that the neurostimulator doesn't entirely eliminate his pain -which he described as "excruciating" before the implantation- but reduces it by about 70%... well within the range of livability and return to a normal lifestyle. In fact, he once told me that when he begins to feel breakthrough pain coming on and he activates the neurostimulator, the initital sensation is really quite pleasant.

    Also, he was told that if for some reason the neurostimulator didn't work out for him (which isn't uncommon) removal of the implant is also a simple outpatient procedure.

    Your question having jogged my memory about his experiences, I did some research on neurostimulators for peripheral neuropathy , and what I've read pretty much confirms what he had to say about the risks (few) versus the benefits (many). The only significant difference seems to be the location of the implant. In his case it was near his spine, the source of the pain. For the majority of neuropathy patients, placement would probably be guided by wherever the pain is worst.

    I found no instances where the implantation surgery presented any difficulties at all. It's subcutaneous, and only a local anesthetic at the spot of the implant is required. Insertion of the wires leading from the stimulator to the points of pain is done subcutaneously by needle, again requiring only a local anesthetic.

    To me, it sounds very promising. The principle involved is simple: your activation of the neurostimulator would send a message to the brain, intercepting the "pain message" and arriving at the brain before the pain does.

    Good luck and God bless,

    Frank

    Last edited by Mariner403; 05-17-2014 at 03:33 PM. Reason: Error Correction

     
    Old 05-17-2014, 07:37 PM   #3
    Vinegar
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    Re: Neuro Stimulator for Peripheral Neuropathy??

    Quote:
    Originally Posted by Mariner403 View Post
    Hi Vinegar :-)

    I have no experience with neurostimulation, but one of my brothers-in-law has been using it for chronic post-surgical back pain for a little over a year. Having previously relied on opiates for pain relief -gradually moving "up" from hydrocodone to oxycontin as the need increased- he swears by his neurostimulator.

    The device was inserted subcutaneously on an outpatient basis in the vicinity of his upper right buttock, and there were no complications beyond learning how to control the "dosage" via his controller. The initial programming of the device was accomplished by the doctor's staff on the same day as the implantation procedure, and it hasn't since required changes. (And even if changes were required, they would be done without further surgery... just a reprogramming of the control device by a technician in the doctor's office.)

    He told me that the neurostimulator doesn't entirely eliminate his pain -which he described as "excruciating" before the implantation- but reduces it by about 70%... well within the range of livability and return to a normal lifestyle. In fact, he once told me that when he begins to feel breakthrough pain coming on and he activates the neurostimulator, the initital sensation is really quite pleasant.

    Also, he was told that if for some reason the neurostimulator didn't work out for him (which isn't uncommon) removal of the implant is also a simple outpatient procedure.

    Your question having jogged my memory about his experiences, I did some research on neurostimulators for peripheral neuropathy , and what I've read pretty much confirms what he had to say about the risks (few) versus the benefits (many). The only significant difference seems to be the location of the implant. In his case it was near his spine, the source of the pain. For the majority of neuropathy patients, placement would probably be guided by wherever the pain is worst.

    I found no instances where the implantation surgery presented any difficulties at all. It's subcutaneous, and only a local anesthetic at the spot of the implant is required. Insertion of the wires leading from the stimulator to the points of pain is done subcutaneously by needle, again requiring only a local anesthetic.

    To me, it sounds very promising. The principle involved is simple: your activation of the neurostimulator would send a message to the brain, intercepting the "pain message" and arriving at the brain before the pain does.

    Good luck and God bless,

    Frank
    Frank,

    Thanks for the quick and comprehensive response.

    I have a fear of implanting devices, but also have severe foot and lower leg pain that is not controlled by Lyrica.

    Thanks again, I will look at this option more seriously based on your response.

     
    Old 05-18-2014, 09:32 PM   #4
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    Re: Neuro Stimulator for Peripheral Neuropathy??

    Check with your Dr. if you have a heart condition or stents. I was told I could not use the stimulator. Diane

     
    Old 05-19-2014, 06:49 AM   #5
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    Re: Neuro Stimulator for Peripheral Neuropathy??

    Very good advice. Also, I forgot to mention that the stimulator rules out MRI testing.

     
    Old 05-19-2014, 07:24 AM   #6
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    Re: Neuro Stimulator for Peripheral Neuropathy??

    Hi everyone, thank you Frank for your detailed information. Do you or anyone reading this happen to know if the stimulator could also work for nerve pain in other areas---such as the abdomen?

    I had bariatric surgery in 2008 (5'6", weighing in at 300 lbs., now back up to 120 lbs., but lowest was 103lbs.---very scary) and have had a multitude of complications stemming from the original surgery. Ultimately I have had my gall bladder removed, had an open exploratory surgery that was supposed to have reduced adhesions (this is not believed at this point), and after seeking other opinions had a para-esophageal hernia and a mesenteric hernia repaired. Unfortunately, due to long delays in getting the large hernias repaired, I now have nerve damage to my stomach and intestines. My intestines no longer work properly, so I have to take medication in order to absorb vitamins and minerals from food, plus I take so many different vitamins in pill, liquid and injection form its difficult to keep track. All of my hair fell out and it is just starting to grow back. (I have not had a period in over 3 years, even though I shouldn't be menopausal yet.) I still have chronic double-me-over abdominal pain, nausea and vomiting even with taking OxyContin continuously and Percocet's for breakthrough pain, Neurontin for the nerve pain, Zofran and Promethazine for the nausea. And it is believed at this point that waiting so long to have these corrected has created a domino effect of other issues, many of which seem to be neurological or autoimmune based. The doctors are not completely certain if some of my other issues would be occurring now if I had not had the bariatric surgery or if these would have happened anyways, but I am now battling lymphedema, peripheral neuropathy with numbness in hands, fingers, feet and toes, and radiating pain down arms and legs, shooting/severe chest pains, depression, anxiety/panic attacks, insomnia, sleep walking, central sleep apnea, and double vision. I was just recently diagnosed with peripheral neuropathy after having blood work, CT Scans, MRI's and EMG's. They discovered 2 bulging discs in my neck and 2 bulging discs and 1 collapsed disc in my lower back, but don't believe these are causing all of the symptoms. My recent blood work showed a positive ANA and a speckled titer, so I'm not sure what their next move will be or if they will want to see me sooner (I got the blood work results from the automated system from the hospital). I see a neuro-ophthalmologist on the 28th of May, then they want to repeat blood work after completing 6 weeks of B12 injections, and I go back to see the neurologist on July 10th. I see my pain specialist monthly, so wanted to know if this is something I should mention that might help?
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    Old 05-19-2014, 10:52 AM   #7
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    Re: Neuro Stimulator for Peripheral Neuropathy??

    Quote:
    Originally Posted by Elizabeth804 View Post
    Check with your Dr. if you have a heart condition or stents. I was told I could not use the stimulator. Diane

    Thanks for the reply. I am very hesitant about having something inserted into my spine and an electrical device implanted under my skin. I have read a number of horror stories.

     
    Old 05-19-2014, 01:15 PM   #8
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    Re: Neuro Stimulator for Peripheral Neuropathy??

    Hi Sharilynn :-)

    The short answer is yes, neurostimulation is sometimes used to treat chronic abdominal pain. But before I go on, please be aware that if I had a medical degree, it would probably have been issued by the LaSalle Extension University :-) I answered the first question in this thread simply because I had some indirect experience with neurostimulation through my brother-in-law's history, and at my age (73), one becomes fairly adept at researching medical matters as a way to maintain sanity and avoid hypochondria. So the below is nothing more than what I learned through researching the subject.

    First thing: although neurostimulation is indeed sometimes used for acute and chronic abdominal pain, the phrase "with limited success" invariably appears in almost any article on the subject. I don't know whether that means it sometimes doesn't work at all, or that it sometimes doesn't reduce the pain significantly.

    The procedure is as I described above. A small stimulator with its own battery is inserted beneath the skin, and subcutaneous wires are led from it to the site of the nerves that transmit pain messages to the brain. A needle is used to guide the wires to the proper place (that is, "percutaneously" in doc lingo). It's done on an outpatient basis, with no overnight stay in a hospital.

    The battery, by the way, has to be replaced from time to time, typically every 5 years or so. That procedure is even simpler than the initial insertions, because the wires need not be disturbed. Just a small incision to take the device out, slap in a new battery, put a Band-Aid over it and you're on your way.

    I can see no reason for not consulting your pain specialist about this. The fact that he/she hasn't already brought it up doesn't necessarily mean he's ruled it out. Use of neurostimulators is widespread, but is also a very narrow specialty, meaning that some physicians are only marginally aware of it... as something to "look into later". Neurological medicine is extremely complex, and it's very unlikely that any single physician is aware of all possibilities in diagnosis and treatment of the huge array of neurological pathologies, many of which are only dimly understood, if understood at all.

    So if your pain specialist rules it out, I think you should seek another opinion -perhaps several- before giving up on it. Most particularly (and this, as I'm sure you know, is very hard to do), I'd be inclined to get specific and comprehensive reasons why it might not be right for you. Remember: these docs work for you, not the other way around!

    Good luck and God bless,

    Frank

     
    Old 05-20-2014, 03:20 AM   #9
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    Re: Neuro Stimulator for Peripheral Neuropathy??

    I had a neurostimulator implanted in August 2013 at the VA hospital in WestPalm Beach FL. After failed back surgery( inadequate, really) in 1995. 2 more surgeries to follow in 1998 and 2000. Have been on disability since 09/2000. Spent 13 years on narcotic pain medicine, anti depressants and countless epidurals, acupuncture, biofeedback, masssge, and physical therapy .I was on crutches , cane, walker, wheelchair. I was literally at a point of surrender. Totally overwhelmed.
    They offered me the stimulator as THE last option.
    It has saved my life. I am down to pain levels of 1 and 2 from levels of 7 and 8. My pain meds have been decreased by 66%. My depression is under control with 50% lower dose. I no longer have to choose between taking a shower or getting the mail! I can do both and a lot more. My family and friends and neighbors continously comment that I seem like a "new person". But I know its the real me. No longer racked with pain 24/7. Occasionally, I overdo it and I get breakthrough pain- but never like before and instead of automatically reaching for pills, I turn up the juice and it eases off. At this point, I take methadone 15mg tid just to stave of withdrawal and I hope to eventually wean off or go to detox. Long story short: the device SAVED MY LIFE. I wish you well and im here to answer any questions!

    Last edited by Administrator; 05-20-2014 at 09:58 AM.

     
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    Old 05-20-2014, 06:26 AM   #10
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    Re: Neuro Stimulator for Peripheral Neuropathy??

    beamybea
    Thanks for the reply. So glad you are doing well with the SCS. Is the battery pack implanted under your skin troublesome in any way?

    Last edited by Administrator; 05-20-2014 at 09:59 AM.

     
    Old 05-20-2014, 08:50 AM   #11
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    Re: Neuro Stimulator for Peripheral Neuropathy??

    Hi Beamybea :-)

    In my researches I ran across a brief article about someone that suffered horribly with back pain for years, but finally tried the neurostimulator. When asked about it on one occasion, he said: "I thank it every day for giving my life back."

    Frank

    Last edited by Administrator; 05-20-2014 at 10:00 AM.

     
    Old 05-20-2014, 12:33 PM   #12
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    Re: Neuro Stimulator for Peripheral Neuropathy??

    Hello Vinegar -- I usually post on the back problems board, but happened to notice your post. Have you had a MRI of your spine? Or, what tests have you had to determine the diagnosis of peripheral neuropathy?

    Sometimes what is diagnosed as PN is really the first signs of an issue in the lumbar spine. It could also be from the cervical spine, but this is less common.
    It would be a shame to go through all the steps involved in getting a neuro stimulator, only to find out another condition was causing your PN.

    Also, neuro stimulators used to only be implanted when a patient had completely run out of options, because they have their own risk factors. Now that pain management has grown to be a common medical specialty, they are recommended much for frequently, often before a simple surgery that would resolve the issues that are causing the pain. I don't mean to be cynical, but the pm doc makes a lot of money implanting each and every neuro stimulator!

    If you decide this is right for you, do your research and be sure you understand all the risk factors. They are not as simple as doctors tend to make them sound.

    Last edited by teteri66; 05-20-2014 at 12:42 PM.

     
    Old 05-20-2014, 12:49 PM   #13
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    Re: Neuro Stimulator for Peripheral Neuropathy??

    Quote:
    Originally Posted by teteri66 View Post
    Hello Vinegar -- I usually post on the back problems board, but happened to notice your post. Have you had a MRI of your spine? Or, what tests have you had to determine the diagnosis of peripheral neuropathy?

    Sometimes what is diagnosed as PN is really the first signs of an issue in the lumbar spine. It could also be from the cervical spine, but this is less common.
    It would be a shame to go through all the steps involved in getting a neuro stimulator, only to find out another condition was causing your PN.

    Also, neuro stimulators used to only be implanted when a patient had completely run out of options, because they have their own risk factors. Now that pain management has grown to be a common medical specialty, they are recommended much for frequently, often before a simple surgery that would resolve the issues that are causing the pain. I don't mean to be cynical, but the pm doc makes a lot of money implanting each and every neuro stimulator!

    If you decide this is right for you, do your research and be sure you understand all the risk factors. They are not as simple as doctors tend to make them sound.
    Teteri66,
    Thanks for your post. My PN began as a result of chemotherapy and was later increased by onset of diabetes.

    I agree the PM docs get a lot of $$ for selling these things. I just shudder at the thought of a plate and wires running out of my spine and a battery pack implanted under the skin. I am almost afraid to try the trial.

    Vinegar

     
    Old 05-22-2014, 02:46 AM   #14
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    Re: Neuro Stimulator for Peripheral Neuropathy??

    Hey- I hope you are doing well and getting the feedback to help you decide what to choose. The battery under my skin is just below my waist posteriorly. It took a little longer for that incision to heal and I had quite a bit of bruising initially. Within a few months it healed nicely. Mostly it is not bothersome and I am careful not to bump it or back into anything. It is a little tender sometimes but in the big picture it is well worth it. I have read so many posts where people are sharing about their struggles with getting their meds right or the right meds. I am extremely grateful to be free of that problem and the SCS is the reason. I would recommend it to anyone that has been given the option! Please let me know what you decide and feel free to ask me anything- best wishes, bea

     
    Old 05-22-2014, 05:51 AM   #15
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    Re: Neuro Stimulator for Peripheral Neuropathy??

    Quote:
    Originally Posted by beamybea View Post
    Hey- I hope you are doing well and getting the feedback to help you decide what to choose. The battery under my skin is just below my waist posteriorly. It took a little longer for that incision to heal and I had quite a bit of bruising initially. Within a few months it healed nicely. Mostly it is not bothersome and I am careful not to bump it or back into anything. It is a little tender sometimes but in the big picture it is well worth it. I have read so many posts where people are sharing about their struggles with getting their meds right or the right meds. I am extremely grateful to be free of that problem and the SCS is the reason. I would recommend it to anyone that has been given the option! Please let me know what you decide and feel free to ask me anything- best wishes, bea
    Thanks Bea, I am weighing risks/benefits at the moment and will report back with my decision.

     
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