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zjandre (@zjandre)

Implantable neurostimulator for chronic pain

Spine Health | Last Active: Feb 20 12:52pm | Replies (319)

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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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Replies to "Hi @zjandre, and welcome to Connect. I'm tagging @ladyjane85 and @mntnlaural as both members were recently..."

I am considering one for more than 15 years of chronic neck pain. Tried every other thing imaginable.

And thank you.

Hi. How do i contact the persons mentioned in your reply? Thank you very much for the information. Kind regards. Andre

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

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.

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.

@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

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.

@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

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.

Great point medic7054!

I totally forgot to mention the leads.
Yes, at every appointment and just before your surgery be sure you confirm with the rep and the Doctor that you want to be sure all your leads are MRI Compatable and approved (that is if your unit is supposed to be MRI compatable).

After one of my surgeries I found out that one of the leads they decided would work best was not yet approved as MRI Compatable and even though they said it would be approved soon, the imaging places would not do my MRI.

Another item that was never discussed or explained well to me before my surgeries.

Jim,
The battery is located inside the control unit, so there is just one implant and the leads.

I had them at 2 different levels near the beltline.
The original one was right under the belt and I liked it there. The current one is just above and it bothers me because my belt actually digs in a bit below the unit.

They actually form a pocket below your skin to slide the controller in. For each of mine they cut a horizontal opening and that was the top of the pocket. I did not know enough to specify exactly where I wanted it and so when I said under the beltline like the other one was – i guess he just got it close. (not an earth shattering issue, but something I look back on and wish I had been clearer on where to place it).

My other one is on the left side of my back just about at the last rib. it can be annoying when I lie on something hard or against a metal chair or such. They said they could place it further away but that would require extension leads which provides another possible area for issues. So I decided not to add the extension leads.

Again, at the time I just wanted relief. Now that I have it, I wish I have been educated more about the possibilities.

Ultimately, the final decision will be by the surgeon during the operation – he’s the boss, but your rep should be there to ensure that what is done is in YOUR best interest.

Wishing you the best!
Carl

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