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

I see a lot of posts about back pain and others, but no mention of how effective it is for idiopathic peripheral neuropathy. Has anyone had either a positive or negative experience with the spinal cord stimulator for neuropathy? My pain is mainly in my feet.

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@lisab62

I’ve had the Spinal Cord Stimulator for pain of Variant Angina
It has taken care of the pain however it does not cover the pain of a heart attack or a bad spasm. Took a little while to
Get used to it but now it’s part of my life and totally worth it.

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Have stable angina had many stents and it was time to have open heart surgery. Angina went, something I have to learn to live with that like I have been doing for the last seven years. The Open Heart what’s completed on December 2011. I learned feelings of my body when I have an angina attack. Started to have more pain with my angina attacks. Preformed catherization and found my right femoral artery was 100% blocked. Had a stent in artery that was 65%blocked. My stable angina continues with more pain and more episodes. Asked two cardiologists and one pain doctor, about the spinal cord stimulator and all of them do not recommended the stimulator. Success of this instrument it’s not worth the percentage of people it helps. The surgery to put in the stimulator and if it needs to be taken out is a major surgery. If my angina is different I could be having a heart attack and would not know it with the stimulator. As for the stent and the right side of my heart is all the cardiologists can do prognosis is not good. But will keep trying Stimulator thumbs down.

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@zjandre

I had one and then two stimulators placed to calm down my pain. They worked fine except every time I sat down I had to adjust the controls. I had to repeat this process when lying down, turning over in bed, and bending over. It just got too much for me, and eventually had both removed.

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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, I had a St. Jude Medical DRG (dorsal root ganglion) stimulator put in earlier this year. It specifically targets both my feet. It works really good, I got significant relief, like 50-60%. Enough that I can go out and take a walk and do yard work and sleep without constantly being woken up by with shooting pains. Unfortunately not enough to be able to reduce my pain meds much. But if I over do it, the pain gets pretty bad in the evening.

I also have a regular neurostimulator in the epidural space across T7-T9 that helps a lot w my leg pain higher up.

One caution which I wish I had had better council on is knowing how to find out more about the Dr. doing the implant. On the original type stim unit it took 5 complete replacements over 2 years in Oklahoma before I moved to MN and was referred to a neurosurgeon who really knew how to install the permanent unit and secure it in place.

I still don’t know how to find out that info, but when I moved to MN I was referred to Dr. Schultz at MAPS Medical Pain Clinic in MN for the DRG and Dr. David Chang at United Pain Clinic to properly clean out the scar tissue from the earlier surgeries and place it in the optimal position. If u can figure out how, I would highly recommend flying up and having them do it here.

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@lisab62

I’ve had the Spinal Cord Stimulator for pain of Variant Angina
It has taken care of the pain however it does not cover the pain of a heart attack or a bad spasm. Took a little while to
Get used to it but now it’s part of my life and totally worth it.

Jump to this post

Hello @alll, and welcome to Connect. Thank you for sharing your story about living with the frustrating complications of stable angina with the other members of the chronic pain group. It sounds like your physicians do not think the risk/reward benefit is so much that it would be worth risking in a stimulator for your pain. Although frustrating, it is best to trust your medical provider’s input.

You mentioned that stents are the only option currently and the prognosis is not good. Only if you are comfortable, would you mind sharing a bit more about that?

Also, it may be beneficial to start a discussion in the Heart & Blood Health group, found here https://connect.mayoclinic.org/group/heart-blood-vessel-conditions/. I suggest calling the discussion “Stable Angina” or something along those lines so that we can bring members to the conversation. Do not hesitate to ask how to do this if you are having troubles.

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I trialed a scs device which is an electrical stimulator and it did not yield results for me but from what I understand it can help some and it is an excellent way to get pain relief without drugs. I am going to have the medtronic pain pump installed and hope that it will relieve my thoracic pain from a failed fusion and severe osteoporosis. I wish you the best and hope this can work for you. The trial is relatively painless. I had leads put into my spine and had to carry around a small device and spoke to someone regularly on the current levels.

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@pinkpain51

I trialed a scs device which is an electrical stimulator and it did not yield results for me but from what I understand it can help some and it is an excellent way to get pain relief without drugs. I am going to have the medtronic pain pump installed and hope that it will relieve my thoracic pain from a failed fusion and severe osteoporosis. I wish you the best and hope this can work for you. The trial is relatively painless. I had leads put into my spine and had to carry around a small device and spoke to someone regularly on the current levels.

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I have a pain pump, have had it for 3 years. I am so glad that i finally decided to do it. I get much more relief from the pump than i did from pain medicine taken orally. Although i do have pain meds through the pump, it works more effectively than the pain meds taken orally. If you decide to get the pump, i wish you good luck and i hope it works for you.

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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 did a trial with the stimulator for pain in my ankle and feet and it was not helpful for me. I have found more help with the new Quell tens device on the market now. I think that if you don’t get substantial relief from the trial it is not worth going through having it implanted. I found the trial stimulator very annoying and actually painful at the site of it and it seemed very unstable. I know they are working to advance the success of the device but it just was not for me. Be very selective about the doctor that does the implant. The doctor I visited with that would actually do the implant was unimpressive and in fact he told me the infection rate was about 2% which seemed high for me, particularly when dealing with the spine. Maybe things have improved since then since this was a few years back. I hope you have success.

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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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@gailg

I had no problems with the trial. The unit I’m getting is quite new, called Burst, marketed by Abbott. It’s totally MRI compatible, which was important to me, and I had significant relief from the pain during the trial. I hope it will be effective long term.

Jim

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@medic7054

@zjandre

I had one and then two stimulators placed to calm down my pain. They worked fine except every time I sat down I had to adjust the controls. I had to repeat this process when lying down, turning over in bed, and bending over. It just got too much for me, and eventually had both removed.

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I had that same experience with the changing levels until they got approval and turned on the Burst technology. Now I never feel it and it works way better. That was the end of last year.

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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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Hi,
I have posted above.
I have Nerve damage all over my body from Chronic Lyme disease.

One thing I would think about and discuss before the surgery is the placement of the control box. At first I just went w what they said figuring there was no choice. Now I have one on my belt line and one mid back on the side (on opposite sides – kind of abnoxious). You need to think about how it might effect the things you do (of course when I started the process I really did not see any future so my mind was not thinking about that). They can use extensions if you want it in a place too far for the leads but there is added risk w extra connections.

There are lots of important details that no one ever brought up w me that I started to question once I could think better.

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my son had a medtronics ns and worked well. still has it in but not using due to unrelated problems

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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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@cbrackle

How does it work, having it on your belt line? I’d think that it would be uncomfortable. I’m quite slim, so I don’t have much padding to cushion it. What are the options? The rep spoke very briefly about placement, and I haven’t given it a lot of thought. There’s a battery unit – is there a second unit that’s implanted?

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?

Jump to this post

jimhd
I had two stimulators placed for peripheral neuropathy. Used them for two years with some success, BUT, I became tired of having to adjust them EVERY time I changed position. Even in bed. It was too painful until I could adjust them so I had them both removed. 5 years later I needed an MRI and it was discovered thru an x-ray that the wires were still in my back so I had to have them removed. Yet another surgery. The MRI could now be done. The radiologist said that the wires were not ferrous (made from steel), but would likely heat up during then MRI.

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@medic7054

@zjandre

I had one and then two stimulators placed to calm down my pain. They worked fine except every time I sat down I had to adjust the controls. I had to repeat this process when lying down, turning over in bed, and bending over. It just got too much for me, and eventually had both removed.

Jump to this post

@zjandre

The Burst technology has made significant changes to the spinal cord stimulator. It’s said to be completely MRI compatible, and is easier to regulate. The wireless control stays at home, except for extended trips out of state. I may be getting a second one because neuropathy has numbed my urinary system.

I just hope I won’t be incapacitated very long after the implant, as this is the peak time of yard and garden work. I’m working hard now so everything is caught up.

Jim

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