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

@miro

I have had chronic nerve pain, in one very specific area on my right upper chest, for over 11 years now. About 2 years ago I asked one apparently well respected pain doctor in my pain clinic if a spinal neurostimulator was an option for me. She said it was not. While she spent 5 minutes with me, other doctors there had spent a lot of time trying different medications, interventions, etc. with me. The doctors can’t absolutely figure out where the pain come from, but think it’s from my spinal cord at about T3 or 4. The pain clinic ran out of ideas for me so I am no longer a patient there. I am still seeing a neurologist, however, who is always thinking outside the box. Do you have any idea if this falls in his domain? He has found lesions in my spinal cord which look similar to MS lesions, but aren’t. I have rambled on a bit. My basic question is about the use of neurostimulators and if anyone knows what they are best used for.

Thanks and I’m pleased for you and all those who have had positive results.

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Hello @miro,

Great question about neurostimulators. Are you eplying by email? If so, I suggest clicking on VIEW & REPLY at the bottom of this notification. It will take you to the full conversation, where you can see @cjpeterson‘s great account of his experience with neurostimulators just a few posts above yours. I think it will help with your question.

@miro, what has your new neurologist said about stimulators?

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@cjpeterson

The reprogramming is done by the Nevro tech with a wifi connection from her laptop. She places a small transmitter next to you near your implanted device. The more information you can give her about what worked or didn’t work with the program you were using will help these techs pinpoint that sweet spot that gives maximum pain relief. It takes a couple of days for the changes to be absorbed by your nervous system and feel its effect. You can after a couple of days increase the frequency or power to see how that feels. I found it interesting that more power is not always more better when it comes to these implants, Too much power can sometimes cause pain. It is important though to try higher settings just to see how it affects you. It really can feel too high I have found out; it was an odd sensation of just being a little buzzed but not in a good way. I was advised to go back to a lower setting. My implant is in the cervical area or neck and have been told that is bit more sensitive than the lower back. Generally they give you two new programs and keep one that stays the same when changing the leads programming.

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@miro @cjpeterson

I have written about my scs implant in previous posts. I had been having more pain in my feet and toes, so on 11/30 I had the generator adjusted so it reaches my toes. I have a Burst DR stimulator, implanted in June of this year, and this was the second adjustment made since the implant. It’s something that’s common procedure for the scs.

I have idiopathic peripheral neuropathy, with the most pain in my feet, in addition to the pins and needles and numbness. It’s a severe burning pain which was reduced by around 80% with the trial implant, and continues to give me significant relief. I do have pain when I stand or walk on hard surfaces for very long, but rest and Lidocaine cream take the edge off.

I have both autonomic and small fiber neuropathy, which I’m still trying to figure out.

The Burst DR technology transmits signals to the nerves, with no physical sensation. Other technologies generate vibration that can be felt anytime the stimulator turns on. If the adjustment I had done a few weeks ago doesn’t do the job, my understanding is that the technician will switch to the other type of stimulation that I’ll be able to feel. That’s something I had hoped to avoid because of the many negative comments I’ve read. I still hope I’ll be able to stay with the Burst DR system.

One thing that is a real advantage to me with the St. Jude scs is that it’s MRI compatible. I have had numerous MRIs, so that’s important to me. I know that there are other imaging options, but I want to have the MRI available.

I’m happy to answer any questions you might have, and am always interested in hearing the experiences of others.

Jim

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@miro

I have had chronic nerve pain, in one very specific area on my right upper chest, for over 11 years now. About 2 years ago I asked one apparently well respected pain doctor in my pain clinic if a spinal neurostimulator was an option for me. She said it was not. While she spent 5 minutes with me, other doctors there had spent a lot of time trying different medications, interventions, etc. with me. The doctors can’t absolutely figure out where the pain come from, but think it’s from my spinal cord at about T3 or 4. The pain clinic ran out of ideas for me so I am no longer a patient there. I am still seeing a neurologist, however, who is always thinking outside the box. Do you have any idea if this falls in his domain? He has found lesions in my spinal cord which look similar to MS lesions, but aren’t. I have rambled on a bit. My basic question is about the use of neurostimulators and if anyone knows what they are best used for.

Thanks and I’m pleased for you and all those who have had positive results.

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@miro

The scs technician said stimulators are used for quite a number of areas of the body.

Jim

REPLY

Hello. I have experienced neuropathic pain for about 10 years stemming from multiple unsuccessful surgeries on both feet. I have tried Neurontin and Lyrica with mind numbing brain fog and extreme tiredness side effects coupled with poor pain control. Cymbalta gives a very small benefit. TENS units just give an annoying alternative pain distraction for me. I have been successfully treated with Vicodin and Oxycodone over most of this period with realitively small dose increases. However, my doctor seems to be feeling the anti-opioid hysterica and is strongly suggesting that I undergo a trial for a neurostimulator. Could some of you folks give me some details of what a trial entails. (1) For example, can the temporary device be installed in an office setting or must it be done in a surgicenter or as a hospital outpatient? (2) What kind of anastasia is required, just a local, or something more? (3) How long does the test period last? (4) How does one bath with the temporary device in place? (5) Why does it seem many people have positive results with the test, but less benefits with a permanent installation? Thanks for any guidance or advice!

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@sam65

Hello. I have experienced neuropathic pain for about 10 years stemming from multiple unsuccessful surgeries on both feet. I have tried Neurontin and Lyrica with mind numbing brain fog and extreme tiredness side effects coupled with poor pain control. Cymbalta gives a very small benefit. TENS units just give an annoying alternative pain distraction for me. I have been successfully treated with Vicodin and Oxycodone over most of this period with realitively small dose increases. However, my doctor seems to be feeling the anti-opioid hysterica and is strongly suggesting that I undergo a trial for a neurostimulator. Could some of you folks give me some details of what a trial entails. (1) For example, can the temporary device be installed in an office setting or must it be done in a surgicenter or as a hospital outpatient? (2) What kind of anastasia is required, just a local, or something more? (3) How long does the test period last? (4) How does one bath with the temporary device in place? (5) Why does it seem many people have positive results with the test, but less benefits with a permanent installation? Thanks for any guidance or advice!

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@sam65

I think that these questions and many others would be answered if you’d go back to the beginning of the discussion and just read through the comments.

If you have any problems finding the discussion, let me know, and I’ll try to direct you there.

Jim

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@sam65

Hello. I have experienced neuropathic pain for about 10 years stemming from multiple unsuccessful surgeries on both feet. I have tried Neurontin and Lyrica with mind numbing brain fog and extreme tiredness side effects coupled with poor pain control. Cymbalta gives a very small benefit. TENS units just give an annoying alternative pain distraction for me. I have been successfully treated with Vicodin and Oxycodone over most of this period with realitively small dose increases. However, my doctor seems to be feeling the anti-opioid hysterica and is strongly suggesting that I undergo a trial for a neurostimulator. Could some of you folks give me some details of what a trial entails. (1) For example, can the temporary device be installed in an office setting or must it be done in a surgicenter or as a hospital outpatient? (2) What kind of anastasia is required, just a local, or something more? (3) How long does the test period last? (4) How does one bath with the temporary device in place? (5) Why does it seem many people have positive results with the test, but less benefits with a permanent installation? Thanks for any guidance or advice!

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@jimhd
I have read many posts all of which were interesting. I did find a partial answer to my question 5); however, I did not find answers for questions 1) through 4). Therefore, I will take you up on your offer to give me some specific directions.
Thanks so much.

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@sam65

Hello. I have experienced neuropathic pain for about 10 years stemming from multiple unsuccessful surgeries on both feet. I have tried Neurontin and Lyrica with mind numbing brain fog and extreme tiredness side effects coupled with poor pain control. Cymbalta gives a very small benefit. TENS units just give an annoying alternative pain distraction for me. I have been successfully treated with Vicodin and Oxycodone over most of this period with realitively small dose increases. However, my doctor seems to be feeling the anti-opioid hysterica and is strongly suggesting that I undergo a trial for a neurostimulator. Could some of you folks give me some details of what a trial entails. (1) For example, can the temporary device be installed in an office setting or must it be done in a surgicenter or as a hospital outpatient? (2) What kind of anastasia is required, just a local, or something more? (3) How long does the test period last? (4) How does one bath with the temporary device in place? (5) Why does it seem many people have positive results with the test, but less benefits with a permanent installation? Thanks for any guidance or advice!

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@sam65
Here are my replies to your questions. Jim might remember better since my test was over 3 years ago.

1) it has to be done in a surgicenter or hospital as they use a type of xray to optimally position the leads 2) and use waking sedation to test where you feel the stimulation before bandaging them in place.
3) the test period is 5-7 days.
4) you can only shower – but honestly I cannot remember if they even allowed that. Might be a sponge bath deal.
5) I have 2 stimulators and I had the same experience w both. I think it is due to how the leads heal into place and therefore what they have direct contact to.

Carl

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@sam65

Hello. I have experienced neuropathic pain for about 10 years stemming from multiple unsuccessful surgeries on both feet. I have tried Neurontin and Lyrica with mind numbing brain fog and extreme tiredness side effects coupled with poor pain control. Cymbalta gives a very small benefit. TENS units just give an annoying alternative pain distraction for me. I have been successfully treated with Vicodin and Oxycodone over most of this period with realitively small dose increases. However, my doctor seems to be feeling the anti-opioid hysterica and is strongly suggesting that I undergo a trial for a neurostimulator. Could some of you folks give me some details of what a trial entails. (1) For example, can the temporary device be installed in an office setting or must it be done in a surgicenter or as a hospital outpatient? (2) What kind of anastasia is required, just a local, or something more? (3) How long does the test period last? (4) How does one bath with the temporary device in place? (5) Why does it seem many people have positive results with the test, but less benefits with a permanent installation? Thanks for any guidance or advice!

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@cbrackle

Thanks, Carl, for responding. I concur with your answers.

Jim

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@sam65

Hello. I have experienced neuropathic pain for about 10 years stemming from multiple unsuccessful surgeries on both feet. I have tried Neurontin and Lyrica with mind numbing brain fog and extreme tiredness side effects coupled with poor pain control. Cymbalta gives a very small benefit. TENS units just give an annoying alternative pain distraction for me. I have been successfully treated with Vicodin and Oxycodone over most of this period with realitively small dose increases. However, my doctor seems to be feeling the anti-opioid hysterica and is strongly suggesting that I undergo a trial for a neurostimulator. Could some of you folks give me some details of what a trial entails. (1) For example, can the temporary device be installed in an office setting or must it be done in a surgicenter or as a hospital outpatient? (2) What kind of anastasia is required, just a local, or something more? (3) How long does the test period last? (4) How does one bath with the temporary device in place? (5) Why does it seem many people have positive results with the test, but less benefits with a permanent installation? Thanks for any guidance or advice!

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@cbrackle
@jimhd

Thanks Carl for taking the time to answer my questions. It is very much appreciated.

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@sam65

Hello. I have experienced neuropathic pain for about 10 years stemming from multiple unsuccessful surgeries on both feet. I have tried Neurontin and Lyrica with mind numbing brain fog and extreme tiredness side effects coupled with poor pain control. Cymbalta gives a very small benefit. TENS units just give an annoying alternative pain distraction for me. I have been successfully treated with Vicodin and Oxycodone over most of this period with realitively small dose increases. However, my doctor seems to be feeling the anti-opioid hysterica and is strongly suggesting that I undergo a trial for a neurostimulator. Could some of you folks give me some details of what a trial entails. (1) For example, can the temporary device be installed in an office setting or must it be done in a surgicenter or as a hospital outpatient? (2) What kind of anastasia is required, just a local, or something more? (3) How long does the test period last? (4) How does one bath with the temporary device in place? (5) Why does it seem many people have positive results with the test, but less benefits with a permanent installation? Thanks for any guidance or advice!

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My trial for the Nevro implant lasted about 7 days and the surgery was done at the pain clinic. The anesthesia or sedation is given intravenously and the medication is typically is one that offers a quick recovery. I believe someone told me they may want to talk to you during the procedure so they can bring you to consciousness quickly. The other thing I remember is that you don’t remember much after the sedation so have someone with you take notes. Bathing is tough as you absolutely cannot get the device wet. The nurses said it was a sponge bath situation. I put a stool in my bathtub and washed carefully with my hand held shower head. My hair was washed bending over kitchen sink using the sprayer to rinse. I put a plastic bag over my shoulders to protect the device. We are an extremely clean culture but bathing used to be every Saturday night. I don’t think th nurses approved of all of my methods but no harm was done. Pretend your camping and roughing it.

As to why the trial can be better than the implanted device? I don’t know. I am going through that now-great trial, not there yet with the implant. The programmer said In the first months your nervous system is getting used to the signal so changes to the program aren’t unusual. Sometimes scar tissue may change the lead positioning. She said a difference of a millimeter in the leads positions can change the programming so with such a small margin for error the programs used in the trial are not going to work the same. That sweet spot is still there but needs to be found again. There is the slight chance that the leads moved during the healing stage. My device is in the cervical area serving the head, shoulders and arms and may be more difficult to program than the lower back implant.

The only other thing I can offer here is pay attention to the type of device you’re getting. Google the different devices and see what they have to offer for your type of problem. My brother in law is an anesthesiologist and his partners like the Nevro. (Pain doctors start out typically as anathesiologists and pain treatment is a speciality.). The nevro SCS affects a larger area, is radicular in its coverage or follows the nerve path through the limbs. It may be better for neuropathic pain according to him. Make sure your doctor is at least using it, some doctors are very conservative about newer medicine not a bad thing but these devices can last 10 years so do your homework and ask the doctor why this device he selects is best for you. I wasn’t offered the Nevro at one clinic because the doctor hadn’t looked in to it yet. The Nevro is a high speed signal and the Medtronic and St. Jude are a lower signal strength. Nevro has patented their signal so no other device can do that speed legally. The Nevro doesn’t have to be turned off while driving or sleeping because you never feel the signal. The lower speed devices can give you a tingling sensation when bending your body or turning your head, a distraction while driving and disruptive during sleep. Good luck, Cathy

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@sam65

Hello. I have experienced neuropathic pain for about 10 years stemming from multiple unsuccessful surgeries on both feet. I have tried Neurontin and Lyrica with mind numbing brain fog and extreme tiredness side effects coupled with poor pain control. Cymbalta gives a very small benefit. TENS units just give an annoying alternative pain distraction for me. I have been successfully treated with Vicodin and Oxycodone over most of this period with realitively small dose increases. However, my doctor seems to be feeling the anti-opioid hysterica and is strongly suggesting that I undergo a trial for a neurostimulator. Could some of you folks give me some details of what a trial entails. (1) For example, can the temporary device be installed in an office setting or must it be done in a surgicenter or as a hospital outpatient? (2) What kind of anastasia is required, just a local, or something more? (3) How long does the test period last? (4) How does one bath with the temporary device in place? (5) Why does it seem many people have positive results with the test, but less benefits with a permanent installation? Thanks for any guidance or advice!

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@cjpeterson

Cathy,
Many thanks for all the information. It gives me a lot to consider.

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Thank you for your replies, Jim, Justin and cjpeterson (Sorry, I can’t see if you’ve signed your name.). I am seeing my neurologist this week, and will definitely be asking him his thoughts on the neurostimulator. He retired a few years ago, was bored and returned to work in a private group practice, so I assume no longer has the same access to the Montreal Neurological Institute that he had, but is still full of ideas. He knows all the meds, interventions and alternative treatments I’ve tried. I very much hope his opinion of whether or not the stimulator is appropriate differs from the pain clinic doctor I asked, several years ago.

I find it very helpful to have this chronic pain chat group. As so many of you have said, it’s hard to keep telling your thoughts, questions, etc., to people who don’t experience it – without feeling that I must be boring them silly!

Good luck to all – Gillian

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@miro

Thank you for your replies, Jim, Justin and cjpeterson (Sorry, I can’t see if you’ve signed your name.). I am seeing my neurologist this week, and will definitely be asking him his thoughts on the neurostimulator. He retired a few years ago, was bored and returned to work in a private group practice, so I assume no longer has the same access to the Montreal Neurological Institute that he had, but is still full of ideas. He knows all the meds, interventions and alternative treatments I’ve tried. I very much hope his opinion of whether or not the stimulator is appropriate differs from the pain clinic doctor I asked, several years ago.

I find it very helpful to have this chronic pain chat group. As so many of you have said, it’s hard to keep telling your thoughts, questions, etc., to people who don’t experience it – without feeling that I must be boring them silly!

Good luck to all – Gillian

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Great. I’ve learned to be nearly obsessive about research, and recommend it to all. You might Google Burst DR before your appointment. I always like to go to my appointments as informed and prepared as I can.

As I’m sure you’ve heard many times that everyone responds to treatments differently. Option A might be wonderful to some and terrible to others. Option B might just be a total scam. I think that when it comes to medicine, we all keep practicing it until we find what works. It’s not just doctors who practice medicine. (Smiley face here)

I hope you have a productive appointment, @miro – Gillian.

Jim

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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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Yes, a Boston Scientific for almost 10 yrs. Finally had it removed this year since I received no relief from it.
The neuropathy in my feet and ankles is getting worse, and is painful at night. Walking is pure muscle memory now, and shoes are very uncomfortable. Summer is great as I can wear open sandals.

Liked by wandamiller

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@miro

Thank you for your replies, Jim, Justin and cjpeterson (Sorry, I can’t see if you’ve signed your name.). I am seeing my neurologist this week, and will definitely be asking him his thoughts on the neurostimulator. He retired a few years ago, was bored and returned to work in a private group practice, so I assume no longer has the same access to the Montreal Neurological Institute that he had, but is still full of ideas. He knows all the meds, interventions and alternative treatments I’ve tried. I very much hope his opinion of whether or not the stimulator is appropriate differs from the pain clinic doctor I asked, several years ago.

I find it very helpful to have this chronic pain chat group. As so many of you have said, it’s hard to keep telling your thoughts, questions, etc., to people who don’t experience it – without feeling that I must be boring them silly!

Good luck to all – Gillian

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Well, I had my appointment with my neurologist today and before I lose the little energy left in me, he also said I was not a candidate for a neurostimulator as no one (& I’ve consulted so many) knows the origin of the neuropathic pain and the reason for its intermittency – i.e. every evening & night but not every day – makes it even more confounding.

I was quite content being boring & predictable…but I guess that was not going to be forever! Back to strong coffee & scotch as the best helpers. Could be worse, right?

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