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!
Kathy. I do not know anything about neurostulators
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.
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.
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.
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
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?
Just want you to know that I am hoping that the epidurals work for you, making the neurostim implant a moot point.
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.
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
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.
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
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...
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.
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, 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
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