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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@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.

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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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@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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@miro,

That is a bummer that you did not get the answer you were hoping for, but it must be encouraging that the opinions seem to agree and you won’t have to undergo a surgery or procedure. Did the neurosurgeon have any new ideas for you regarding your pain or pain management?

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I had the stimulator installed for neuropathy in my legs and feet caused by a back injury. It was put in Jan 3rd, 2018. Today is the 18th. I need to know if any one of you got hives after having it put in? I stopped taking the antibiotics and muscle relaxers I was given post surgery because I am covered in huge welts that burn and itch to the bone! My Dr ordered me prednisone to help but its not helping. They’re worse than ever.
I can’t imagine whats caused this as I am using the same products as always and cant think of anything I. May have ingested or come in contact with that would have caused hives.
Has anyone else experienced this after receiving the implant stimulator?

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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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Omg! You’re telling my story. The only difference is I just had this surgery on Jan 3rd , 2018. I feel like I was rushed into this surgery and also felt threatened by my pain management Dr. I feel like I was pushed into have ing that surgery. Since the surgery, I have been in horrible pain and am covered in hives from my scalp to my toes. I’ve never had them in my life and they keep getting worse despite medicine to get rid of them.
I’ve never felt so alone and helpless in my life.

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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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I just had it installed Jan 3rd, 2018. Ive never been so miserable and uncomfortable in my life. Five days ago I developed hives. I’ve changed nothing in my daily living that would have caused the hives.
I can’t help but think it has something to do with the surgery.

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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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Sounds to me ,your body is rejecting it .Think about having it removed. Not everyone is made the same ,but with hives that s an allergy,so you decide but I recommend having it removed.

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