Implantable neurostimulator for chronic pain

Posted by zjandre @zjandre, Apr 13, 2016

Has anybody had an implantable neurostimulator for chronic pain?

@marieh

Would like to hear from patients that have had a Nevro Stimulator implanted

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@marieh Not a Nevro, this was one from St Jude’s, who are in the OR
with dr also, and program it whenever by coming to home.
To me they are no better than a strong TENS unit. Told
may 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 my
common 9 level. @ladyjane85

REPLY
@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. ❤️

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

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@marieh

Would like to hear from patients that have had a Nevro Stimulator implanted

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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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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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@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. ❤️

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@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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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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Has anyone with a pain pump, had the nevro put in? I was told by my pain doc, that i could have both. But I wanted to research it, before i had it done.

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@elltd

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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I had the temporary placed and it degreesed my pain 50-70%. It was terrific. 2 days ago I had the permanent Nevro placed in my lower back. I am definitely not paralyzed. Where did you get your info? Are we talking about the Nevro Spinal Stimulator? The only pain I feel is from the insision and that should be very short lived.

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@goldielocks

I had great success with the trial but the perm implant has been a disaster. My wish was to have a better life after 30 years of severe nerve damage and four lumbar surgeries but it was the biggest mistake of my life. After reviewing the FDA site and other comments I recommend staying away from it. There are just to many problems and horror stories from placement surgery to problems years later. No matter how bad it is today we have to ask ourselves COULD IT BE WORSE? Chances are the answer is yes. Sorry for sounding bitter. I also have PTSD because I felt the doctor cut me open to remove the device. I can’t get past it.

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I continue to suffer with severe nerve pain from my buttocks to my toes. I can’t tolerate sitting, standing or anything inbetween. The calf muscles continue to move all the time and they hurt. I was told that this stimulator should have never been suggested since I already had previous nerve damage. Apparently my body is hypersensitive and nothing can be done. The nerves need time to recover and that can take up to two years if they recover at all. I am sensitive to medications and there is not one that I can take to help. I was also told that the stimulator can help patients during the trial, because its like a party for your nerves feeling relief that they have not felt for so long but when the perm implant is put in you never get the same response. One thing to keep in mind is that the trial is always done with the lead wire but your doctor might suggest the paddle. I believe my outcome would have been successful had they used the paddle. My life has changed forever. I live alone. I cannot go back to work. I really don’t know what will happen to me now. No way to support myself, no one to help. I am in pain 24 hours a day. I cannot do anything that I did before the stimulator. It was suggested that I go to the Mayo chronic pain center to help me learn ways to live with this pain but I do not have the money to stay in the hotel for three weeks, pay for the program as insurance does not cover all of it and other living expense for the three week long program. It would be nice if Mayo had an indigent care program in place to help patients that would benefit from the treatment center but cannot afford it. I still wonder how can devices like these be approved if there is no way to help the patient if the procedure fails. Shame on the FDC for approving this kind of treatment with so little testing. Shame on the companies that sit and watch their stock increase, NEVRO. Shame on the doctors that continue to play GOD, knowing the damage that they have caused patients should prevent them from doing the procedure on other patients. Nerve pain is so terrible that we will try anything to find relief. Maybe patients should be informed with all facts before jumping into anything a doctor suggests will provide relief. Search a little harder, look at more studies that have been done, listen to other complaints. I know I have to live minute to minute. What kind of life is worth living with this kind of pain? I do want to wish those of you starting out on your new journey the best of luck.

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@goldielocks

I had great success with the trial but the perm implant has been a disaster. My wish was to have a better life after 30 years of severe nerve damage and four lumbar surgeries but it was the biggest mistake of my life. After reviewing the FDA site and other comments I recommend staying away from it. There are just to many problems and horror stories from placement surgery to problems years later. No matter how bad it is today we have to ask ourselves COULD IT BE WORSE? Chances are the answer is yes. Sorry for sounding bitter. I also have PTSD because I felt the doctor cut me open to remove the device. I can’t get past it.

Jump to this post

My heart goes out to you. I only had 1 spinal surgery, complete with fusions and cages. I was mentally psychi up to go for another. I then went to Mayo & the Neurosurgeon said no more surgeries and no more injections. That’s how I ended up with the Nevro Stimulator. So far, except for the pain around the placement of the Nevro, I’m doing good. I’m still taking Hydrocondin which do not seem to be doing a great deal of good. My Nevro is turned down to the very lowest siting. It will be that way for 2 weeks. Then every 2 weeks it will go up in increments to reach a satisfactory setting. Think seriously about Mayo. I’m not sure if I said but have only had the Nevro in for 5 days. When I first discussed Mayo with a group of friends one of them made the comment that Mayo was expensive. Not so. Their Billing procedure is different but it all works out the same. Good luck to you. Marie

REPLY
@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

Before you get a stimulator you have to go through a few different options such as injections. You just can’t go to the Doctor and say I’ll take a dozen. Good luck!

REPLY
@elltd

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

Jump to this post

When I typed the reply to elltd’s message I had just woke up. Hopefully, my spelling didn’t confuse anyone i,e, “degreesed”, “insision”. I do know how to spell when I’m awake. I would like to give an update on the Stimulator tho. Like any surgery (& it wasn’t exactly a “piece of cake” like they seemed to want you to think at Mayo) I’ve had good and bad days.
My Nevro Rep has it turned down to the lowest setting for 2 weeks and, then, will turn it up gradually. Hopefully, reaching a point like the test, that will give me some relief and I can have my life back. I would really recommend this to anyone with extreme back pain to explore this procedure. Marie

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