Has anybody had an implantable neurostimulator for chronic pain?

Posted by zjandre @zjandre, Apr 13, 2016

Has anybody had an implantable neurostimulator for chronic pain?

Liked by bekie, grandmaR

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.

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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

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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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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!

Liked by jleem

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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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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

Liked by bekie

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I did a trial with the new St. Jude product and it was a disaster… it didn’t help and the techs from St Jude didn’t know how to operate it… I certainly did not have them put it in for good and I am very glad i did not. I am using sublingual CBD from the marijuana plant, it works better than the stimulator did, it works quite well actually. NO THC in it, so you don’t get high, not illegal, and don’t smoke it… find a reliable source though.

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@timfitz

I did a trial with the new St. Jude product and it was a disaster… it didn’t help and the techs from St Jude didn’t know how to operate it… I certainly did not have them put it in for good and I am very glad i did not. I am using sublingual CBD from the marijuana plant, it works better than the stimulator did, it works quite well actually. NO THC in it, so you don’t get high, not illegal, and don’t smoke it… find a reliable source though.

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@timfitz Had the St Jude’s stimulator put in – looking for anything to
help my 30 yr back pain. Had it removed 1 1/2 yrs later. It did no good
but rumble away, not fooling my brain.Can take no pain meds, since I have
reacted to over 40 or had no relief. Is the CBD very expensive? Have tried
the THC oil, and I do not react to it, the same as all those meds. am at
wit’s end. Oh, I tried THC very recently. and it did nothing for me, the
same as all the strong pain killers. I did not react even with quite a
dose. @ladyjane85

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I was in the process of getting a temporary one. I had to tell them to stop. I do not wish my horrible experience on anyone. The information and my perception Mayo will be your best place to have this done .

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@elltd

I was in the process of getting a temporary one. I had to tell them to stop. I do not wish my horrible experience on anyone. The information and my perception Mayo will be your best place to have this done .

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I had to have the neurostimulator that St Jude’s dealt with removed – the
vibrating did nothing more than a TENS unit for my pain. I could still
feel it for 10 hours after shutting it off; and even removed get the
vibration at times. But I seem to respond to nothing…. ladyjane85

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My opinion, there’s no money to be made in the cure, only in the treatment.This is the best country in the world. Why is medicine, treatment so expensive. Other countries you pay for treatment,medicine little or no cost, and insurance through your taxes.Why not in the US. I use a Tens on my leg after negative relief three back surgeries and now numbness in my left leg after last back surgery.

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Check all the ads on TV. Who pays for the drug ads placed by the pharmacotherapy companies? US!

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@alysebrunella

Hi @zjandre, and welcome to Connect. I’m tagging @ladyjane85 and @mntnlaural as both members were recently discussing neurostimulators. I would also encourage you to check out the thread Chronic pain – Let’s Talk as I feel like you may find additional members to connect with in this group (https://connect.mayoclinic.org/discussion/are-there-any-discussions-for-chronic-pain/)

Are you considering an implanted neurostimulator or did you recently have one implanted?

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Has anyone used the stimulator for peripheral neuropathy, specifically in the feet?

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I had an implant about 3 years ago.. Love it & works great for the sciatica pain in leg as I have stenosis of my back..

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@marieh

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

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I actually had the St. Jude’s one implanted as well & have had it for about three years.it is actually working so well for me. still have pain but the sciatica is way better.

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