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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@bunnybear

Please go to the discussion on Spinal Cord Stimulator’s elsewhere. If you do get one, work closely with their techs and follow instructions re how long to leave changes in place.

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Thanks for your comments !

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@covenantdga

Have been experiencing ongoing back pain (primary lower back) and mobility issue even though I had Laminectomy and Spinal Fusion surgery 15 months ago. My neurosurgeon who performed the surgery said that nothing looks out of order based upon a recent MRI and CT Scan. I went to get another opinion from a spine specialist who upon having my x-rays said that the surgery did not take. Specifically he said that I have screws that are coming loose in the S-1 / L5 area and also some kind of spacer needs to be replaced at lower end of my spine. Plus there are two screws loose at the T-10 vertebrae.

Originally this specialist told me that one of the options would be an ALIB or something like that where they enter through your navel and do a minimally evasive procedure. But today he said that he thinks that there would be a less than 50% chance that I would have any appreciable change in either my pain and / or mobility condition. He said that the MRI showed that there are no pinched nerve as that may be contributing to my pain.

So, I am now scheduled to see another specialist who would do some kind of spinal stimulator procedure which would be targeted to help relieve my pain. So with the long lead up, has anybody has any experience with this kind of procedure and / or application, good or bad ? The online research said that there have been some good results.

I also am to see a neurologist about my mobility issues. It is like my brain is telling my legs to move but they aren’t getting the message and have extreme difficulty getting around, although I ditched the wheel chair last year and the walker earlier this year and have been on a cane since then but very unstable.

Any thoughts or comments about your personal experience would be appreciated.

Note: I also have peripheral neuropathy that certainly impacts my mobility but was told that in having my Laminectomy and Spinal Fusion surgery it might improve my peripheral neuropathy. It hasn’t.

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Hello @covenantdga, you may notice I moved your discussion and combined it with an existing discussion titled, "How did you get relief with a spinal stimulator? Adjustments? -https://connect.mayoclinic.org/discussion/nevro-spinal-stimulator-patients"

I did this so you could read the experiences like members @rangerlester @bunnybear (who you have already met).

@covenantdga, did the specialist you were referred to say what kind of stimulator you were going to have? Many members start with a trial period before more permanent options are explored, is this what you will be having done as well?

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@JustinMcClanahan

Hello @covenantdga, you may notice I moved your discussion and combined it with an existing discussion titled, "How did you get relief with a spinal stimulator? Adjustments? -https://connect.mayoclinic.org/discussion/nevro-spinal-stimulator-patients"

I did this so you could read the experiences like members @rangerlester @bunnybear (who you have already met).

@covenantdga, did the specialist you were referred to say what kind of stimulator you were going to have? Many members start with a trial period before more permanent options are explored, is this what you will be having done as well?

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Thanks !

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@covenantdga

Have been experiencing ongoing back pain (primary lower back) and mobility issue even though I had Laminectomy and Spinal Fusion surgery 15 months ago. My neurosurgeon who performed the surgery said that nothing looks out of order based upon a recent MRI and CT Scan. I went to get another opinion from a spine specialist who upon having my x-rays said that the surgery did not take. Specifically he said that I have screws that are coming loose in the S-1 / L5 area and also some kind of spacer needs to be replaced at lower end of my spine. Plus there are two screws loose at the T-10 vertebrae.

Originally this specialist told me that one of the options would be an ALIB or something like that where they enter through your navel and do a minimally evasive procedure. But today he said that he thinks that there would be a less than 50% chance that I would have any appreciable change in either my pain and / or mobility condition. He said that the MRI showed that there are no pinched nerve as that may be contributing to my pain.

So, I am now scheduled to see another specialist who would do some kind of spinal stimulator procedure which would be targeted to help relieve my pain. So with the long lead up, has anybody has any experience with this kind of procedure and / or application, good or bad ? The online research said that there have been some good results.

I also am to see a neurologist about my mobility issues. It is like my brain is telling my legs to move but they aren’t getting the message and have extreme difficulty getting around, although I ditched the wheel chair last year and the walker earlier this year and have been on a cane since then but very unstable.

Any thoughts or comments about your personal experience would be appreciated.

Note: I also have peripheral neuropathy that certainly impacts my mobility but was told that in having my Laminectomy and Spinal Fusion surgery it might improve my peripheral neuropathy. It hasn’t.

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I do have an SCS and have had the same 2 surgeries as you. My fusion did resolve my spine slipping, so that's good, but did nothing for my damaged nerve root pain (as the Neurosurgeon told me it probably wouldn't, and he was right!).
My background: I still have the damaged nerve root pain from Lumbar to toes. HOWEVER, the SCS handles my back pain very well - just not the pain down my leg, nor the numbness nor the burning and of course, it cannot affect the weakness - just interrupts pain signals. Nothing really showed up on the last MRI I had, several years ago (Radiologist refuses to do MRI's to eval my brain tumor because I have 2 implants now, so haven't had a brain tumor update in 6 yrs, but it's OK anyway - and I did buy the MRI-Approved version!).
I tried 2 different SCS brands during my trial - and only 1 gave any relief down the back of my leg at all.
Both handled Lumbar constant achiness/pain. I tried Medtronic and Boston - and for me, the Boston was better. However, do be prepared for many weeks of adjustments by Techs before you achieve the best results. Due to programming background, they gave me code to do my own programming, and i was able to adjust it nightly until I got it to be the best it could be. I still do rely upon my SCS and use it 24x7. I also still require Meds for the burning feet and legs (it's like standing in a bon fire - all the time! Not even one breath without severe burning, achiness, and pain...in many years). But now I can walk without assistance! I do carry on a reduced, but mostly normal life. Stenosis is also an issue for me. And I can say, for me, it was worth the time, cost and small discomfort of the surgery. Definitely, even though it doesn't cover everything it was designed to cover and they told me it would cover.

I'll be more than happy to honestly answer any questions you may have. BUT I strongly recommend ONLY go with a Surgeon who's had many, many successful SCS's - as I belong to a few groups and have seen some terrible ones!
I would consider asking a Dr to review MRI results as to the screws, etc. That you do have constant pain that may be caused by them, and you want to know if that's correct - or if it's something else. Also, how lose are the screws? That may matter in the future!
Good luck.

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@debmoby

I do have an SCS and have had the same 2 surgeries as you. My fusion did resolve my spine slipping, so that's good, but did nothing for my damaged nerve root pain (as the Neurosurgeon told me it probably wouldn't, and he was right!).
My background: I still have the damaged nerve root pain from Lumbar to toes. HOWEVER, the SCS handles my back pain very well - just not the pain down my leg, nor the numbness nor the burning and of course, it cannot affect the weakness - just interrupts pain signals. Nothing really showed up on the last MRI I had, several years ago (Radiologist refuses to do MRI's to eval my brain tumor because I have 2 implants now, so haven't had a brain tumor update in 6 yrs, but it's OK anyway - and I did buy the MRI-Approved version!).
I tried 2 different SCS brands during my trial - and only 1 gave any relief down the back of my leg at all.
Both handled Lumbar constant achiness/pain. I tried Medtronic and Boston - and for me, the Boston was better. However, do be prepared for many weeks of adjustments by Techs before you achieve the best results. Due to programming background, they gave me code to do my own programming, and i was able to adjust it nightly until I got it to be the best it could be. I still do rely upon my SCS and use it 24x7. I also still require Meds for the burning feet and legs (it's like standing in a bon fire - all the time! Not even one breath without severe burning, achiness, and pain...in many years). But now I can walk without assistance! I do carry on a reduced, but mostly normal life. Stenosis is also an issue for me. And I can say, for me, it was worth the time, cost and small discomfort of the surgery. Definitely, even though it doesn't cover everything it was designed to cover and they told me it would cover.

I'll be more than happy to honestly answer any questions you may have. BUT I strongly recommend ONLY go with a Surgeon who's had many, many successful SCS's - as I belong to a few groups and have seen some terrible ones!
I would consider asking a Dr to review MRI results as to the screws, etc. That you do have constant pain that may be caused by them, and you want to know if that's correct - or if it's something else. Also, how lose are the screws? That may matter in the future!
Good luck.

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Very helpful …….. thanks ! So sorry you have had so much suffering and pain. Cabot be much fun.

Dumb and probably seemingly inappropriate question. Can you still do things like get in a poll of the ocean ? Am planning to head to Florida the week after next for 15 days and found that last year my time in the pool while I was recovering from the initial back surgery very therapeutic.

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My husband had a spinal stimulator placed. The company that manufactured it was in contact with weekly. They made 2 adjustments (over internet) and it was great for him.

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Very encouraging ……… thanks !

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I'm new to the site and the conversation. I had my spine stimulator removed just two weeks ago after three years of adjusting and working with my pain management doctor. The trial gave me some relief, so we progressed with the hope to achieve more. Unfortunately, it didn't work out. The stimulator was attempted after having minimal relief from injections and ablations became ineffective. Hopefully the stimulator will work better for others. I had no issues with the device itself. It just didn't work for me.

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@swampfox182

I'm new to the site and the conversation. I had my spine stimulator removed just two weeks ago after three years of adjusting and working with my pain management doctor. The trial gave me some relief, so we progressed with the hope to achieve more. Unfortunately, it didn't work out. The stimulator was attempted after having minimal relief from injections and ablations became ineffective. Hopefully the stimulator will work better for others. I had no issues with the device itself. It just didn't work for me.

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Appreciate your response and sharing your experience. Am battling in two fronts ……… pain and mobility. Am digressing and it looks like the calvary is not coming. The doctor who is the one who specializes in the spinal stimulator procedure can not seem me for an initial consult for over a month and the neurologist for three months. In the meantime I am digressing daily. By the time I get in to see either specialist I may be back in a wheelchair. Aa they say, it is what it is.

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Received very little benefit from the spinal stimulator.

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