How did you get relief with a spinal stimulator? Adjustments?

Posted by glenjunderwood @glenjunderwood, Mar 19, 2022

My name is Glen and i have had the Nevro HF10 spinal stimulator implanted since Sept 1, 2021 and the company rep hasn't been able to dial it in on my terrible lower back pain yet. I have complete confidence in this unit because the temporary one that they inserted worked unbelievably well. It's been 6 months and counting with no relief thus far. I'm hoping to reach out and hear from anyone out there about their experiences with this Nevro unit. Please help if you can! Thank You!

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Hi Glen (@glenjunderwood),
I have read several accounts from other members where they experienced a different level of pain relief from the temporary implant and the permanent implant. I'm tagging a few members like @sbrown293 @martyk @marieh @pusher @scruffy1 @dogsma @chefmike2010 @lifetimepain @jimhd who have experience with spine stimulators, some of whom had the Nevro HF10.

While we wait for others to join in, here's a list of related discussions on Connect that you may wish to review and ask questions to specific members.
– Implantable neurostimulator for chronic pain https://connect.mayoclinic.org/discussion/has-anybody-had-an-implantable-neurostimulator-for-chronic-pain/
– Has anyone one tried the HF10 Spinal Cord Stimulation Device?: https://connect.mayoclinic.org/discussion/hf-10-spinal-cord-stimulation-device-relieves-back-and-leg-pain/
– Spinal cord stimulation: Will Nevro help when Medtronic didn't? https://connect.mayoclinic.org/discussion/nevro/
– Has anyone had the Stimwave spine stimulator installed? https://connect.mayoclinic.org/discussion/has-anyone-any-had-the-stim-wave-installed/
– T.E.N.S. for spinal stenosis pain https://connect.mayoclinic.org/discussion/t-e-n-s-for-spinal-stenosis-pain/
- Anyone used Spinal Cord Stimulation for pudendal nerve entrapment? https://connect.mayoclinic.org/discussion/anyone-experienced-in-using-scs-for-chronic-painb/

Glen, it sounds like you are working with the company representative. How often do they adjust the settings? What options have they suggested?

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I've been going to the Pain Clinic once a month to meet with my Dr. and Nevro Rep. , She has had me adjust my at home control every two days but so far no relief. My Dr. has suggested cauterizing an exposed nerve that he discovered after he had me undergo a CT scan a month and a half ago. He's also mentioned a series of shots that could help with the pain. I've got all the confidence in the world in these two professional personnel and keep praying for better results that I know will come eventually. Thank you for replying!

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Glen, I had my Nevro implanted in November 2021 and have experienced the same situation as you have. They have tried multiple programs on me to no avail. I have met with the Nevro reps on multiple occasions to try and find the correct setting to get some relief. Like you, my trial worked wonderfully but with the permanent implant only a very slight relief. I am determined to make this work as I believe it will help bring relief to my legs and lower back. They tell me not to give up or be frustrated as they have so many programs to work with so I will keep at it.

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Hi Glenn,
I had the DRG spinal cord stimulator implanted after a fairly successful trial. ABBOTT folks adjusted it for about 5 months, and I started to feel electricity running through me that made pain even worse. I never had a successful adjustment in spite of trying easily a half dozen times or more. I shut the darn thing off. Now I have an inactive stimulator and battery in me. Frankly, I rarely hear success stories about any kind of stimulator. I wish you well, and hope they find an adjustment that works for you. Lori

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The same thing helped to me only in my cervical spine several years ago. My Nero stimulator was programmed, adjusted and reprogrammed dozens of times but I never got any relief from it.
Come to find out the leads had came off. My stimulator was removed a few years ago because I needed another surgery. My neurosurgeon wants to put in another neuro-stimulator for my neck but I’m afraid I’ll go through the same thing again.

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I have a drg stimulator for abdominal nerve damage from undiagnosed mals. The trial was 75% pain free and after 4 months, I’m only getting 35-40% ( which is better than nothing) but I’m sad that the trial gave me false hopes.

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@lasirvent

I have a drg stimulator for abdominal nerve damage from undiagnosed mals. The trial was 75% pain free and after 4 months, I’m only getting 35-40% ( which is better than nothing) but I’m sad that the trial gave me false hopes.

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@lasirvent Hi, I also have the DRG stimulator in me and I turned it off months ago. Now it sits inside me, doing nothing. My Pain Doc does not want to have any surgical risk, so he said to just leave it there. The darn thing never worked at all, after a fairly successful trial. I was unfortunate as it even seemed to spread my pain in the last few weeks it was on. Just be careful with your DRG, and perhaps they still can find a better setting for you that helps more? Good luck, Lori

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@lorirenee1

@lasirvent Hi, I also have the DRG stimulator in me and I turned it off months ago. Now it sits inside me, doing nothing. My Pain Doc does not want to have any surgical risk, so he said to just leave it there. The darn thing never worked at all, after a fairly successful trial. I was unfortunate as it even seemed to spread my pain in the last few weeks it was on. Just be careful with your DRG, and perhaps they still can find a better setting for you that helps more? Good luck, Lori

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I. too, have had a stimulator since January (Medtronic). I had such high hopes for pain relief in my low back caused by L4-L5 disc degeneration. My trial was shortened because I didn't want to be off my anticoagulant for a long time; I did have some relief in radicular leg pain during the trial. I haven't had much pain relief at all in my low back. I am on 600 mg gabapentin three times a day and acetaminophen as needed. Pain level is okay when sitting or lying down but horrible if I stand or try to walk. The Medtronic rep. has adjusted settings but nothing works. I'm trying physical therapy to strengthen muscles, etc. MY QUESTION: Have nerve stimulators been oversold? Following my implant I have been hearing stories that stimulators aren't very effective in elderly patients......wish this 83 y/o female had heard this before! True or False? I'd welcome any comments.

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@lorirenee1

@lasirvent Hi, I also have the DRG stimulator in me and I turned it off months ago. Now it sits inside me, doing nothing. My Pain Doc does not want to have any surgical risk, so he said to just leave it there. The darn thing never worked at all, after a fairly successful trial. I was unfortunate as it even seemed to spread my pain in the last few weeks it was on. Just be careful with your DRG, and perhaps they still can find a better setting for you that helps more? Good luck, Lori

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Hi
My sentiments. A few ex colleagues left work to seek help with a diff doc in Mexico I believe.

Blessings.
Ps
Would provide more info but honestly do not ok

Keep searching for help. I am with my neuropathy and the network here has helped me beyond my low expectations.

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@marcya

I. too, have had a stimulator since January (Medtronic). I had such high hopes for pain relief in my low back caused by L4-L5 disc degeneration. My trial was shortened because I didn't want to be off my anticoagulant for a long time; I did have some relief in radicular leg pain during the trial. I haven't had much pain relief at all in my low back. I am on 600 mg gabapentin three times a day and acetaminophen as needed. Pain level is okay when sitting or lying down but horrible if I stand or try to walk. The Medtronic rep. has adjusted settings but nothing works. I'm trying physical therapy to strengthen muscles, etc. MY QUESTION: Have nerve stimulators been oversold? Following my implant I have been hearing stories that stimulators aren't very effective in elderly patients......wish this 83 y/o female had heard this before! True or False? I'd welcome any comments.

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Yes, they have. During the trial I think we are hoping for relief that we believe that it helps; once the device is implanted we simplify don’t get the relief. We all hope for pain relief after suffering so long that mentally we believe there is a miracle for us to get back to a normal life.

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