My pain management doctor is going to try epidurals for my back pain, but if they don't work, he wants to try a neurostimulator. I would really appreciate comments/experiences/suggestions from anyone who has a neurostimulator. I don't look forward to another minor surgery, but if the epidurals don't work, that is my only option. Thanks everyone!
Has anyone else had a neurostimulator implanted for pain control?
Question posted by kathyhanson on 15 Oct 2013
Last updated on 19 November 2024
The information on this page reflects personal experiences shared by our community members. It is not reviewed for medical accuracy and should not replace professional medical advice.
46 Answers Page 3
I had a stimulator implanted over 3 years ago by my pm doctor. It's a Boston Scientific with a lead. It does help, but I still take pain meds. A stimulator is only expected to help with 50% of pain. If you get more relief that is really good. At first I was a different person. But over time my condition had worsened. I still receive enough relief, when I turn it off my pain increases a lot. I am very satisfied with it. The cool thing is they can adjust the Stimulation as needed. You do get used to the feeling of constant stimulation in your body.
Hi, I've been going to Jefferson hospital for the past several years for nerve block shots plus Botox will little relief .i have occipital nerve damage. I have disabilitating headaches and I'm on a strong pain medicines. Had the trial stimulator for 9 days and it complete took my headaches away for the most part. Having a permanent installed on February 23rd and I can't wait
Good luck to you. I hope your headaches are a thing of the past by now.
My Boston Scientific took all my leg and hip pain away. I only have to use pain meds when I've done something dumb, like trim the hedges, or walk the fairgrounds for hours.
I have had a Medtronic stimulator for two years now. It controls the pain in my legs well, but not with my lower back. It also stimulates an area in my ribs which at time drives me crazy. There are huge pros and cons I have experienced and some have to do with the medical communities knowledge of the units.
Before the surgery took place I was told it would improve quality of life. What they didn't tell me was the physical restrictions which would have to be followed. No running, jumping, or high level activity. In other words, I went backwards in the physical department. I have gained some weight due to the decreased activity which also made it hard to charge battery properly and the weight adds to the back problems. Then somehow the battery has come loose and is moving around in my butt cheek also adding to the problems with charging the unit. So far my leads don't seem to have migrated.
As for the medical communities knowledge, it's limited. I recently moved and am having huge problems finding a doctor who understands that this thing does not control all of the pain. My first doctor here treated me like a drug addict and flat refused to listen saying that I had the stimulator and I shouldn't be having pain and no amount of my trying to explain how it works mattered. She wouldn't even recommend a pain management Dr. The second Dr. I am now dealing with is doing the same. I cannot go to a pain management place without a recommendation from my primary. I am getting beyond crazy and depressed with this. They have all the records but I guess cannot be bothered to read them. Anyone have this experience or suggestions??
Hi Kathy,
I had a Medtronic neurostimulator installed in early 2013. You didn't ask this, but the surgery for my Medtronic stimulator was a walk in the park compared to other surgeries I've had. Minimal pain post op, but I did receive Endone for the relatively minor pain I did experience. The controller was wired but initially left outside of my body and taped tightly against it until the doctor was certain the device was going to work. After 4 days he and I were satisfied that my worst pain was under control so there was a second surgery to embed the controller just beneath the skin on the right side of my belly.. There was still a noticeable drop in the severity of the pain and I didn't have much surgical pain so Endone usage was nominal.. Programming was also going on post op, especially right after the first surgery. I left the hospital feeling pretty good.
Unfortunately, about 1 to 2 weeks after I was discharged, the neurostimulator became much less effective and within a month all my pain returned. You may already know this, but the success rate on the Medtronic is between 60 and 70%.- per my surgeon. (There are other brands but they may not necessarily be any more effective.) Re-programming was unsuccessful. Ultimately I turned the device off. This is just an opinion, but I think it may have been a mistake for me to take as much Endone as I did while trialing the device because it may also have masked my neuropathic pain.
My entire system can be removed if I want it gone, but I've decided to have the controller (and maybe the spinal wiring) replaced with a Nevro neurostimulator. It supposedly has a higher success rate and is less intrusive because it operates at a higher electrical frequency than the Medtronic does. Apparently the higher electrical current is less noticeable to the brain. Anyway, based on research, it seems to have a success rate of around 80%. I had asked for the Nevro first, but the surgeon wanted to go with the Medtronic. I'm pretty much out of options surgery-wise so I'm definitely going to try the Nevro neurostimulator and limit the amount of Endone post surgery. Having said the above, the Nevro is not yet approved in the U.S., but it is in use in Europe and Australia. I'm a transplant American living in Australia so I have access to the Nevro. If you're running out of options to reduce your pain, I would still give the Medtronic (or something equivalent to it) a try. But if I had it to do over again, I would not have taken as much or any Endone post surgery. Mistake on my part, I think. One last thought: Make sure your surgeon knows where your worst pain is and ask if there's a reasonable probability of reducing most or all of it. If s/he says the total area is too large for total coverage, I would request (again this is hindsight) that the device be set up to try to control my absolute worst pain. Good luck.
Doug
I tried the neurostimulator but i did not work. I just had the pain pump trial and it did help with the pain .I will have the pain pump implanted with in the next couple months.Hope this helps...
Kathy,
It is a requirement that a temporary ial be done if insurance is going to cover it. with the temporary trial went they do is and I'm up the skin on your back and your pain management doctor or neuro surgeon will place temporary leads into the skin as close to the spine as they can get and they will attach be patient controller to the other end of the electrodes that they inserted into your Skin and they will show you how to use that device to increase and decrease the amount of stimulation based on your pain. Over the course of about a week to 10 days they will bring you back into the office and remove the temporary leave and sq about your pain levels on a daily basis during the trial. I had mine done in November of 2014 and I had 99 percent pain relief. I had a back injury and had back surgery with titanium rods in a fusion done and this was not even an option when I had my surgery done.
So I just had the permanent paddle electrode placed February 19th 2015 so I am still in the healing phase. Feel free to email me if you have any other questions
Did you know there's two types? The leads are the most common but the other is called a paddle... like a ping pong paddle. It doesn't have the ability to slip. But of course you're going to have to be cut on AGAIN.
I've only had mine in for a month but I've been in chronic pain since 2002. I can't do pain patches, my skin sucks em down in an hour or less. Meds either make me throw up, swell up, or stop me up; I'm running outta options. Hopefully this will work and I get somewhat of my life back. Good luck everyone, see ya on the dance floor soon :-)
Hey guys I'm new here but here's my experience. I've had herniated disks in cervical and worse l3-s1. I've had lumber lamenectomy 2x on l4/5 l5/s1 twice with bilateral foramenotomies with some success. Feet wrote up, but still back and let pain. Had a third revision facet shaving, lamenectomy l4/5 with right sided facet shaving and social cyst removal. Previously had done 30+ epidurals/facet blocks/nerve blocks slash whatever they could stab me with.
As earlier started surgery helped give me my feet back, but pain, ehhh. I didn't want a triple lumber fusion because of spinal stenosis so I went with dorsal spinal simulator, lumbar.
Think of you ever liked tens units you might like this. Surgery is a week to 10 days pain, but my skin and nerves on lumbar back I think are just tired of being cut.
It helps my legs a lot. Less pain but even better they don't feel heavy. Those who know what that is know what I mean. Helps a little in lower back but mainly legs. I'll take it. I couldn't take aching legs 24/7 where I didn't want to move. This helps. Not a cure, but worth it if surgery is not option and you don't want to keep climbing mount opioid. Yes I'm still on them, but it's better. Hope that helps.
I realize I'm more than a little late in replying to your question - because I just accidentally came across it, so my reply may be irrelevant to you. I had a Medtronic neurostimulator installed for chronic lumbar spine and left leg pain, and for chronic pain as a result of a total left hip replacement. Regarding the trial period and the permanent installation: the trial installation includes all the internal wiring, but the PLC (programmable logic control) is attached and left dangling outside of the body, but it's secured so it won't come off. If the trial is successful, the PLC is placed inside the body, either in the belly area or in a buttock . This requires a general anaesthetic because the surgeon will have to make an incision and remove fatty tissue to create a "pocket" for the PLC, place it in the cavity, then stitch the skin back together.
My experience was very good during the trial period so I went ahead with the permanent implant. After a total of 5 days in hospital, I left with about 90% pain relief. In fact most of my pain was coming from the PLC being implanted. Needless to say, I was very pleased. Unfortunately, shortly after I got home, say within 3 days, the stimulator had completely lost its effectiveness. Simply put, there was no longer any pain relief. The technician and I spent 6 months re-programming the device to little avail - finally managed to attain about 10% to 15% overall pain relief, and all of it was in my left hip area. A scan was taken to make sure that nothing had moved or come unwired inside me, but all appeared fine. Bottom line is that the stimulator implant was written off as a failure. That said, I knew before having it done that the success rate was only about 60%, but it was very disappointing to leave thinking I had my life back, but discovering after a few days that that wasn't going to happen after all. In summary, there are no guarantees, but if a neurostimulator does work for you, the relief is terrific.
About 16 months have passed since the surgery and the device is still in place because even a little relief is/was better than none. My neurosurgeon is now pushing the Nevro stimulator which operates at a higher frequency and supposedly has a higher success rate. I haven't committed yet. Also, last time I did any research on the Nevro neurostimulator, it was approved in Europe and Australia, but was undergoing testing in the U.S. (I live in Australia which is why it is accessible to me.) Almost forgot: I had originally asked for the Nevro brand stimulator based on the overseas testing which indicated better results, but my surgeon didn't want to go that route.
I just came across this post and had to respond. I went through the trial phase which was... special. The external stimulator was in place for 4 days and worked one good day to relieve the pain. Because the trial uses leads, sometimes the leads move and when that happens the pain control may also change. As of December 4th I have the permanent implant. Just as someone commented it does not fully eliminate the pain but it does help control the pain. Before surgery I refused to use pain meds because I react to so many different pain meds. I can say the implant has (at this point) decreased my pain by 70-80%. If all goes well and I heal as expected according to the Neurologist, pain med doc and the rep... by this time next year I will be back to my routine of walking 1 - 2 miles a day and maybe even zumba and boxing! Its only been a week and a half but I have shed the cane I had to use to walk and am very optimistic.
I may never be like I was before the accident that caused my nerve damage, but maybe life will be a lot less painful! At the age of 40 and having 2 young boys (9 and 8), I am looking forward to being the playful active mom I was before I became the cane using, always in pain mom after my accident.
I hope all works well for you and keep us updated on what happens with you
bbbdre,
Thanks for your response. Your story is very encouraging to me. I must say that the epidural gave me tremendous pain relief until last weekend. I was on my feet all day doing Christmas baking with my daughter. Must call tomorrow to schedule another epidural. I'm sure I won't be able to get it done before Christmas, though. The doctor said that we will talk about the neurostimulator when I have my next epidural. If the epidurals will work for only 3-4 weeks if I try to maintain a life of normalcy. then I might need to look at the neurostimulator more closely. Thanks again. Best wishes for a speedy recovery.
Kathy
Hi Kathy,
My neurostimulator appt. was rescheduled to November, then forgot about your posting. When he told me that I would never be able to get another MRI/MRA which I need to keep track of my brain aneurysm, I readily agreed that I did not want it. So if you think that you might need an MRI or MRA in the future, you might want to think about it.
Kathy,
Glad the epidural helped for a short while! I think the doctor will want you to try at least 3 rounds before they will consider the stimulator. Hope you have a happy holiday!
Thanks Sara and snoopyfan! I have had a pacemaker for 9 years, so I can't have an MRI/MRA anyhow. I need the pacemaker more than I need the testing. I'm hoping I can get an appointment for another epidural the first of January. When he did the first one November 14, he told me to schedule another one for December 5, but cancel if my pain was still under control. It was, so I cancelled. Then the 7th I overdid with Christmas baking and my back started screaming again. Of course! Until I can get another scheduled, I will become a frequent occupant of the whirlpool tub! I love that thing! Merry Christmas to my wonderful DC Family!
Sara, I believe Boston Scientific still makes a neurostimulator that allows MRIs. These were made for people in situation like yours.
I had a Boston Scientific neurostimulator implanted a few years ago. Once everything was in the correct spots, my pain has decreased so much that most of the time I don't need pain meds. I do get flare-ups, but they last only a few weeks! I believe it's required to have a trial before the surgery. If not, INSISIST on a trial. I know it's another surgery, but the decrease in pain is so worth it. I had the laminectomy and fusion and shots, this is the only thing that works. While in PT, work hard. That helps. The more you strengthen your core muscles, the less pain you will be in also.
snoopytann,
It seems that everyone who has responded has received positive results from the neurostimulator. That is good to know, and definitely encouraging. Do you mean I have to do PT with this? I'm very allergic to exercise. I break out in ... a sweat! LOL Oh well, I guess I'll have to get over that!
Thanks,
Kathy
Kathy,
Yes... you need to do PT, but it's not that strenuous! :)
Well, Shucks! My body will go into a revolt if I get too healthy! It won't know how to act! hehe!
Any updates?
I'll get an epidural on November 14. We'll see how it goes. The doctor said he'll give me more info about the neurostimulator when he does the epidural, and then we can talk more. I really don't expect the epidurals to work, though. I had many, many of them on my intercostal nerves and they were unsuccessful. But these epidurals will be on the lumbar and sacral region nerves. So maybe...
Thanks for asking snoopytann! You're a sweetheart!
Kathy
Kathy, where do you live? I can probably get a representative to call you and give you info on the boston stimulator if you don't want to wait. Up to you... epidurals never helped me... and I had 10+! Keep me updated, sweetie!
I live in Alabama. Most doctors have a preferred manufacturer on these things, so will wait to see which one he is wanting to give me before I do any more research on it. I'm hoping he will stick with Medtronic, since they also manufactured my pacemaker. If anyone will know if the two will be compatible, they will. If he talks about the Boston Scientific, I'll definitely PQ you to get more info. Thank you so much. I'll keep you updated. Can't wait for the epidural to see if it works. Sweet relief... I hope ... maybe???
Kathy
I just had a new wire put in me 4 weeks ago. My pain spread to my left foot, which made it very painful for me to walk. As of now, 100% of my pain is gone. I am a big supporter of neurostimulators!
Lisa
Just had the trial on Tuesday Feb 23..needless to say it went terrible,, had to have it removed 3 days later..guess it just wasn't for me, am disappointed..as everything I have tried prior has not worked. Doctor said we would discuss other options next week.but I thought this was last option..anyone know what's next?
Hi Kath,
Just want you to know that I am hoping that the epidurals work for you, making the neurostim implant a moot point.
Lara
XXXXXXX
Me, too! I've had epidurals on the intercostal nerves, but they did not work for more than a few days to a week. But, I am hopeful that the epidural will work on my back, since it's totally different nerves they're dealing with. Thanks Lara!
XXXXXXXX
Kathy
Moot, Moot***luv, Bessie***
Our DD is in a silly mood... moot moot yourself girl!! : )
DD you're a nut! LOL
XOXOXOXO
Kathy
I am new here, but, when I saw you all talking about the neurostimulators, I just had to ask. Is it used for anything other than back pain?? I am in severe pain due to Fibromyalgia, IBS, Bad heart, brain tumor, and bone degeneration. There are a few more diagnosis, but, don't feel it necessary to list all. My pain doc had recommended me getting one, but, says he has to have the Caediologist approve it. Shouldn't my Neuro doc have some say, due to the brain tumor?? I was told this device sends signals to the brain, to confuse pain signals. If the brain is comprimised, wouldn't that be a problem?
You have brought up some very good questions. Obviously, I can't answer them... sorry. I do wonder now if the neurostimulator would interfere with my pacemaker. Hopefully, one of the members can answer both of our questions. Thank you.
Kathy
Kathy - nice to meet you. New around here, and am mostly reading others Q&A, till I figure out how the site works. About the question I responded to about neurostimulator, I was glad to see someone that understood my question. If my doctor was concerned about my heart, there may be some determing factors that either okay it, or rule us out. I don't have pace maker, but have had a triple by pass, and a double by pass, and currently have 5 stents. I also have "collateral", where the heart has created its own by pass. After reading your response, I think my pain doctor needs to clear me from both brain and heart issues. Do you think so too? If brain is compromised, could it be possible these signal this device sends could really confuse the brains activities?? And the heart, which we both have some problems with, gets a lot of messages from the brain, as does the whole body.
I think we both need to do more research, and make sure pain doc totally up to date on what this thing can do to heart/brain. Thanks for giving me something else to get doctor to work out before we even try. I know very little about these stimulators except have read that while it does reduce pain, it does not relieve it. Pain free is not an option for me, but, livable pain could change my life. Best of luck to you. If you find out anything about this, could you let me know? will do some checking myself and will let you know if I find anything.
Blessings, BR
Neurostimulators have been around for about 40 years and are being used for more and more medical issues. I am only familiar with back pain, migraines and Parkinson's. It's basically a huge TENS unit that blocks some/most of the pain message from reaching the brain. That was how it was described to me. The feeling you will feel is similar to when an arm or leg "falls asleep", the tingling. It's not the painful tingling when it "wakes up", but it is steady. You will have a hand held remote control that will control the intensity. The representative from the company will explain this. And if not, ask LOTS of questions because it is your body and you want to be comfortable with any decision you make.
Lisa
Lisa,
Would it interfere with the function of my pacemaker?
That I don't know. If you want to read about the Boston scientific stimulator, go to their website. Use bing and look it up by name. They can answer any questions and have someone call you and talk about their experiences. What state do you live in?
Lisa
Alabama. Someone said that Medtronic makes a neurostimulator. My pacemaker is Medtronic, so it might be wise for me to check into the same manufacturer for both. What do you think?
I was reading everyone's comments. I love helping people. I'm a survivor of many diagnoses. I have seizures, fibromyalgia, degenerative disc from neck down, neuropathy and radiculopathy. I do have the cervical spin stimulator with battery. Dec 2017 will make 4 yrs that I've had it. The stimulator is use to cut the pain signals from reaching the brain. There are pros and cons to all different types of procedures. The trail lets the dr see if it helps and or what needs to be adjusted to better help the patient. Then when implanted it is more harsh recovery, make sure you have it setup up to have help at home. I also think it's great to have this circle of people with the same pains almost to were we can all talk and help each other.
My pain control dr wants to do DRG SYSTEM. ITS A NEUROSTIMULATOR W/3 components.
The generator
The leafs
The patient controller.
I have neuropathy in my feet so badly. It is debilitating. DRG stands for Dorsal Root Ganglion. Much like y'all have described, they do the temp to see if it works, if so, they do the real thing. I'm anxious. Does this hurt?
Tell me your experiences.
Make sure you ask all your Doctors. I'm guessing you have a few. Get them all on board, they should be talking to each other about benefits and risks involved. Obviously they will know more than anyone here on the boards regarding your specific situation. Write your questions down as they come to you and have them addressed by the professionals.
Hi dear Kathy, I have an appointment on October 23rd to talk to a doctor about a sacral nerve stimulator which I understand is a device surgically implanted to give electrical impulses to help one of my pain situations. It sounds like the same type of thing, but maybe not. I'll get more information about it then. If it does sound the same, I will give you more info after my appointment, and more info if I have it done. I understood from another doctor that they can do something on a temporary basis before doing the surgery. You might check into that. (After waiting months for the appointment, it was re-scheduled a month later because the doctor got sick.) Best to you, Sara
Thank you sweet Sara,
Yes, it does sound like the same thing. My pain is in the lumbar and sacral spine. My PM doctor didn't tell me much about it since we will try the epidurals first. I'm just curious how well the neurostimulator works for folks. I hope you can get relief when you see your doctor on the 23rd.
Hugs and love,
Kathy
I have a stim for my many spinal issues, including a failed fusion. It is a St Jude's and has the large 18 electrode leads inserted into the spinal column. I had it implanted in December of this past year, and turned on in January. Though the surgery was much more difficult than the trial, the system has given me so much of my life back. I do still have to take medications and I likely always will, but I can walk again and I can find some measure of relief.
I highly recommend that you find a board certified neurosurgeon to do the trial and the final implant. I believe it is essential that the two surgeries be done by the same person, however, many times the pain management dr will want to do the trial. It just seems most reasonable to have the person who is going to do the final implant do the trial to me.
Also, I realize someone else recommended against the "paddle" leads, but I recommend otherwise because of the issue with movement of the leads. The final determination should be made by the neurosurgeon after they have determined the size of your bony structures and the exact placement you will need to cover the area of pain.
You should also know there are several brands out there and some function very similar and others very different. I understand Boston Scientific and St Jude's are similar and Medtronics is very different. Again, the neurosurgeon will know which is best for your particular problems.
Good luck and I pray you will find relief for your pain!
Thank you pain wise. I'm so glad the device works well for you and has given you a semblance of normalcy again. Your answer has been very encouraging to me, since I fully expect to have to get the device implanted.
Kathy
Hi, i also have an appointment with my neurosurgeon on Oct 28th ,he will just give me valium and oxycodone before the trial implant is installed (for the lack of a better description )i will receive a local anesthesia, i am also going with the Boston Scientific with St Judes the rep from BS from StJudes will be in the procedure room the whole time, he will be available by phone, text or email 24 -7,i will have the temporary stimulator until Nov 2nd at that time they will remove the stimulator if it has helped my pain by 50 %they consider that a win, if i decide to go on to the permanent implant you have to wait 2wks lets the previous surgical areas to heal, also only takes approximately 30 min to place the temp stimulater to remove approx 15 min, to have the permanent stimulator put in place it will be done in the hospital on an out patient basis with sedation,
seems like a lot to go through but as any of you know ,i will have this done it's much only option after 4 yrs of suffering from the results of a car accidents, cause me to leave a career i loved I'm on social security disability now ,the injuries to my back is so severe surgery was never an option x 2 neurosurgeons, you will also have to be evaluated by a psychologist per insurance even Medicare, hope this may helped to explain the procedure process sorry this has been so lengthy, i will come back after each procedure to let you know how my journey is progressing , anyone who has already started or been through the process i would like to hear from you, have a great day.
Hello Kathy... I have one which was manufactured by Boston Scientific. One thing for sure I would advise against is having the paddles verses the leads which are smaller. So, I have the leads and it is anchored to my spine. The battery and wires were placed high up in my buttocks and slightly off center so when you sit down... you aren't sitting on it.
I receive a lot of benefit and can sleep through the night now. It doesn't mask all pain but a good deal of my pain comes from my back. That it handles fairly well. And, I do still use pain killers because of the other conditions I have but getting sleep made it a blessing for me...
Be safe, be well and if you have any questions... I am happy to answer. My responses may be slow because my comments are all "pending approval". Lovely... but no matter.
Mary
Mary, Thank you. Your response is very encouraging. The doctor did tell me that the battery would be implanted in my butt cheek with leads going to my spine. So, it sounds like the same thing. You've been a big help.
Kathy
Hi Mary, My mom got her trial spine stimulater yesterday and would like to know how long it takes it how you get used to the vibration feeling in your arms.
Thanks. I'm so glad the stimulated worked for you.
Vicki I have the one that you also on your butt cheek I've had it for about a 5 years it worked for 3-6 months and it stopped working so would this stivax work better for me I have a low tolerance for my pain Vicki
I have heard both good things and bad things. You will just have to do a trial to see if it helps you. It seems to either help or it doesnt. I know that is not very helpful to you but that is my experience in talking to others with them. I have not personally tried one but my father did and his trial was not good. It made him worse actually but I have spoken to others who say it helps tremendously so you will just have to see for yourself.
I didn't realize that they could do a trial before the contraption is permanently implanted. So, I guess that is a good thing to see if it works. I just pray I have success with the epidurals. First one November 14!
Hugs to you,
Kathy
I hope you have epidural success!! I get 'em every three months.
I have a neurostimulator that was implanted in 2009. It doesn't remove the pain entirely, but rather masks the pain. You have a trial stimulator before the actual to see how it works for you. The recovery is minimal. Honestly, I haven't had to use mine in 2 years because I had further surgery after the implant which helped my pain such that I didn't need it anymore. Thinking about having it removed mainly because with it you can not have an MRI.
Thanks Laurie. Even if it takes some of the pain away, it would be a great improvement. I'm hoping that the epidurals will work, but other injections I have had were unsuccessful after just a few days. I already have a pacemaker, so I can't have an MRI anyway. I really appreciate you sharing your experience with me.
Be well,
Kathy
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