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Implantable neurostimulator for chronic pain

Posted by zjandre @zjandre, Apr 13, 2016

Has anybody had an implantable neurostimulator for chronic pain?

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marieh | @marieh | Jun 17, 2016

<p>Would like to hear from patients that have had a Nevro Stimulator implanted</p>

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Kelsey Mohring | @kelseydm | Jun 17, 2016
In reply to @marieh "Would like to hear from patients that have had a Nevro Stimulator implanted" + (show)
Profile picture for marieh @marieh

<p>Would like to hear from patients that have had a Nevro Stimulator implanted</p>

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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.

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ladyjane85 | @ladyjane85 | Jun 17, 2016
In reply to @marieh "Would like to hear from patients that have had a Nevro Stimulator implanted" + (show)
Profile picture for marieh @marieh

<p>Would like to hear from patients that have had a Nevro Stimulator implanted</p>

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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

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marieh | @marieh | Jun 18, 2016
In reply to @marieh "Would like to hear from patients that have had a Nevro Stimulator implanted" + (show)
Profile picture for marieh @marieh

<p>Would like to hear from patients that have had a Nevro Stimulator implanted</p>

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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.

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ladyjane85 | @ladyjane85 | Jun 18, 2016
In reply to @marieh "Would like to hear from patients that have had a Nevro Stimulator implanted" + (show)
Profile picture for marieh @marieh

<p>Would like to hear from patients that have had a Nevro Stimulator implanted</p>

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@marieh Not a Nevro, this was one from St Jude's, who are in the OR<br>with dr also, and program it whenever by coming to home.<br> To me they are no better than a strong TENS unit. Told<br>may give 50% relief at best!! No relief and nothing but a problem -<br> removed bec one cannot have an MRI with those wires.<br>And the under the skin battery pack had corners that I was<br> afraid to fall on. I tend to faint with high pain.<br>Hope someone can tell us about the Nevro, but even some like the St Jude's<br> stimulator - must have a lower pain level than my<br>common 9 level. @ladyjane85<br><br><br><br><br><br>

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allsmiles5 | @allsmiles5 | Jun 18, 2016
In reply to @bekie "@zjandre Like everything and every procedure there are good and bad results. I had over 80%..." + (show)
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@zjandre

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. ❤️

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If i have 456789 disk pain how many stimulators would they give me?

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marieh | @marieh | Jun 18, 2016
In reply to @marieh "Would like to hear from patients that have had a Nevro Stimulator implanted" + (show)
Profile picture for marieh @marieh

<p>Would like to hear from patients that have had a Nevro Stimulator implanted</p>

Jump to this post

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.

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ladyjane85 | @ladyjane85 | Jun 19, 2016

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

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Profile picture for ladyjane85
ladyjane85 | @ladyjane85 | Jun 19, 2016
In reply to @bekie "@zjandre Like everything and every procedure there are good and bad results. I had over 80%..." + (show)
Profile picture for bekie @bekie

@zjandre

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. ❤️

Jump to this post

@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

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elltd | @elltd | Jun 20, 2016

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

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