Mayo Clinic Connect
Has anybody had an implantable neurostimulator for chronic pain?
Liked by bekie, grandmaR
I recently had a spinal neurostimulator implant that went wrong. One of the lead wires flipped to the posterior side of the spinal cord. The plan was to leave it in and just not turn use that lead. However it was turned on. I now have involuntary muscle movement in my leg muscles 24-7 with an incredible amount of pain. I know the nerves were overstimulated causing muscle issues. I had the neurostimulator removed with hopes it would resolve the problem but it did not. I think I was the first patient the doctor used this new device on and he did not have a clue what to do. I have been exposed to a large amount of electricity since the lead was used for over a week. I don’t know who to turn to for help. I am suffering, can’t go to work, can’t get help and will lose insurance soon if I can’t go back to work. Can someone help me please?
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I think this shows the problems with the stimulators. Of course, I do
not have the pain of a broken lead, but they never understood why I
felt the stimulation even after it was shut off, and to this day after
surgery for removal at least 7 months ago, it will still vibrate in my
body at times. They “never heard of this”. Your situation is terrible
and you have to find a dr. who can deal with this – and I hope you can
sue the manufacturer/and or dr. Wish some drs also read these
articles and can direct you where to go from here. To those of you out
there stimulators are supposed to tell your brain to concentrate on
the vibration instead of the pain. Huh – with high pain level it
cannot. Goldielocks, I do hope some dr can direct you to the right
place for your horrific situation. Why can’t the manufacturer own up
and find the relief…..My loving wishes that you are free of this
The discussion around chronic pain in this thread and other threads has grown to such a point that we, the community moderators, thought that it was time to open a new group dedicated to this topic.
Welcome to the new Chronic Pain group. Feel free to browse the topics or start a new one here https://connect.mayoclinic.org/group/pain/.
Liked by jlfisher56
I’ve had the Spinal Cord Stimulator for pain of Variant Angina
It has taken care of the pain however it does not cover the pain of a heart attack or a bad spasm. Took a little while to
Get used to it but now it’s part of my life and totally worth it.
Liked by Colleen Young, Connect Director, kidsincollge, bekie
@lisab62 I had a spinal cord neurostimulator also put in, due to chronic severe pain, even after 4 surgeries
and every needle procedure there was. None worked, and 40 odd meds had to be discontinued – my body could not take them. I psyched myself up that the stimulator would work. It did not and I needed another surgery to remove it. It is only supposed to mask the pain anyway by tricking your brain. Sad to say it did not work. Some people get 50% pain relief, they say. Hope others answer with their experience. @ladyjane85
Like everything and every procedure there are good and bad results. I had over 80% relief with the temporary one. I had an excellent neurosurgeon do my surgery for my stimulator and amazing follow up with St. Jude. I can not praise my St Jude rep enough. She meets me any time I need her to and will answer any question that I have or research it and get back to be with an answer. Like every other thing I have done for pain relief I went into it with an open mind and asked a million questions. I had a great team for support. My Pain Mgmt Dr, my neurosurgeon’s staff and the St Jude rep. all answered questions and helped the best to make my experience very plesent.
I LOVE MY STIMULATOR!! I sometimes turn it low when the pain is not as bad and I use a couple programs that are my favorites. When my pain is bad I turn it higher and if it doesn’t feel as though it’s working I change the program to get a different massage feeling. I have L-1 to S-1 pain and when it was implanted it was to help the area of L-1 to L-5. Since my back is continuing to bulge and the discs are getting worse around the area it seems to not work as well as I need it to some days. This is not the fault of the stimulator at all. It’s just my discs continue to fall apart in my back. I can’t expect something to do more than what it is capable of or in an area that it was not meant to work. But I love it. I also have sciatic pain and it helps immensely in that area. I can turn up the side that radiates pain and have it work stronger on that side. This helps so much.
A lot of people say they feel like it’s lightening shooting out of their legs or they feel really bad vibrations from it. I have never had any of that unless I turn it up way too high for what I need. I even have the older model.
I love the ability to have several programs or massages types added. So if one seems like it doesn’t work or feels like it is working less, I just try another program. I have a great relationship with the rep and see her about once a year. She adjusts it and the area I need more help with and adds whatever programs I want added to it. We have sat several times in the office and just gone through the programs. She adds them to my device and turns them on, it I like the way it feels I keep it. If not she deletes that one and we try another one. It is a long process but it feels good to try the different options. She will load my device with several of them and I can change them whenever I want to by just calling her and meeting up with her.
I have had it for about 5 years now and I believe it has kept the pain in a reasonable, manageable position for me.
The drawback to it is that once implanted it only works for those specific discs that it was implanted for. So if my neck hurts like it does this morning it will do nothing for me. I will eventually need another one implanted for my neck my Dr thinks.
I also find that turning it up makes me feel energetic and “stimulated” and helps me get motivated to get moving and get stuff done. Sometimes I feel the sensation on my legs makes me cold in the summertime air conditioning so I have to adjust it several times in the summer days.
All in all I Love My Stimulator!! If you have any questions feel free to reply to the post and I will try to give you personal experience type answers if I can.
Thank you for posting and I hope you find some relief. ❤️
Liked by Colleen Young, Connect Director, ahsatan
Would like to hear from patients that have had a Nevro Stimulator implanted
Hi @marieh. I’m moving your post over to this thread in the Chronic Pain group: https://connect.mayoclinic.org/discussion/has-anybody-had-an-implantable-neurostimulator-for-chronic-pain/.
There you’ll find @ladyjane85, @pamperthyself, @lisab62 and @bekie posting about their experience with neuro stimulators.
Hi @marieh – I had a neurostimulator for my chronic high level back pain even after 3 surgeries in lumbar with rod and screw fusions.
One is told there can be up to 50% relief. No such luck – even with reprogramming several times, it would rumble away for many hours even after shut down, I hated to have that 5th surgery but all was removed. See what others say bec some have newer models . Mine was put in in 2013 and removed 15 months later. It did nothing for me, but my pain level hits 8, 9 and 10!! @ladyjane85
Was it the Nevro Stimulator? I understand a couple other companies manufacture them, including Medtronics. The Nevro one is the one the Dr recommended. Thanks for any info you have on the Nevro. Good luck to you.
@marieh Not a Nevro, this was one from St Jude’s, who are in the ORwith dr also, and program it whenever by coming to home. To me they are no better than a strong TENS unit. Toldmay give 50% relief at best!! No relief and nothing but a problem – removed bec one cannot have an MRI with those wires.And the under the skin battery pack had corners that I was afraid to fall on. I tend to faint with high pain.Hope someone can tell us about the Nevro, but even some like the St Jude’s stimulator – must have a lower pain level than mycommon 9 level. @ladyjane85
If i have 456789 disk pain how many stimulators would they give me?
I had the Nevro for 7 days as a test. For 4 days it was beyond terrific. On the 5th day I woke up and was back to square one. I knew I had pulled the wires loose (the Dr warned me about that because, during the test, the wires are only taped down). During the test it reduced my pain by 50-70%. I’m due to have the permanent one put in on this coming Tuesday. Please keep your fingers
crossed. Mayo clinic in Scottsdale is doing the implant and I can hardly wait.
Liked by Colleen Young, Connect Director, Deena
Much luck to you, @marieh If you got that much relief at the trial (before the disconnect), you should have a good pain reduction element implanted in your body. My best…..@ladyjane85
Liked by Colleen Young, Connect Director, pamperthyself
@allsmiles5 I assume it would depend on how many and where the leads are in the wiring. Best of luck – I also have 8,9 and 10 pain, but have had no relief from stimulator fusions, epidural procedures of all kinds and tne 40 odd meds do not agree with my body or do nothing. It is one stimulator, I would think, with the implanted battery pack and your remote which can be programmed for the areas of pain. 2ladyjane85
I was going to have a temporary one placed to see if it will work for me My personal experience, and opinion, do not get this done.The pain and discomfort I went through is not worth the risk of being paralyzed. Please understand that I have not had any treatment from Mayo,I am not suggesting or saying anything negative about Mayo. I have had 3 back surgeries L- 2-3,3-4,-4-5,fusions with braces and screws. After the thrid surgery things became worse. My left leg inside from my groin to knee is painful and numbness. My left knee is painful. It feels as if I have no leg. My leg has given out, and I have fallen. I use a knee and back braces. I am taking Hydrocoydone and other medications.I tried shots in the spine with negative results. I also use Aspercreme, at night, this gives me relief to sleep,and function during the day. I am totaly disabled, and was forced to retire. I hope this works. There is no money in the cure, only in the treatment. My opinion
Liked by legsnmrlegs
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