Nevro hf10 spinal cord stimulator

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I just had a trial implant of this device after hearing tall claims by the company. I was under the impression that the company would work closely with me to find the optimal settings. Even in this trial period I seem to be chasing Nevro staff with no success instead of being the other way around. Is this a precursor of what to expect from Nevro. Are they just interested in selling or do they care about their patients? Any experience ? Please help me.

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  • Posted

    Hello Onlyraj,

    I have read this happening over and over again. My neurosurgeon wants me to try spinal stimulator I don't think I will sorry for your experience

    take care

    Jackie

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  • Edited

    I did my Nevro HF10 trial (for 10 days) back in March 2018. I had the device permanently implanted in June 2018. So a couple of things in response to your comments and questions:

    First, I'm surprised that your rep (and prescribing doctor) weren't fawning all over you during the trial period. My Nevro rep was all over me during my trial period - I must have texted him 50 times or more during that ten day period and he generally texted back (or called) quickly every time.

    My issue with the trial was that my experience was mixed. I could tell that the stimulator potentially had benefits but there were also side effects that I didn't know could happen. But in the end my thinking was - I just went through hell to get this thing approved by my insurance company. If I don't get it implanted now (i.e. if I say it didn't work at trial), I'll never get it covered by insurance in the future. My rejection of its efficacy now would haunt me forever and I'd never get another crack at it again. And what if this WAS a cure-all? I couldn't walk away from that possibility.

    So I took a chance and asked for it to be implanted after the trial. And here is a summary of my experiences, which hopefully can help guide you.

    (1) First of all I would say that despite my misgivings during the trial, the device HAS worked to some degree. It has lowered my pain and it has allowed me to reduce, modestly, my level of pain medication. But it definitely didn't live up to the hype that Nevro feeds you on its website - I'm not out there playing tennis, hiking, golfing, etc. But I AM in less pain and on fewer meds, which is better than the alternative.

    (2) You should absolutely be fearful that your Nevro rep will become even less helpful after implantation. I don't know if those reps are on commission or not (I have to imagine they get rewarded SOMEHOW for talking people into a permanent implantation), but be aware - once the device is implanted, there are no further revenues going towards Nevro from you. So don't expect the rep to be super-attentive. You will have to be insistent that he help you. I found the best way to do that was to enlist your doctor's office in scheduling him to meet with you. He may not give a crap about you after implantation, but he DOES care about keeping the doctor happy in order to get more trial candidates going forward.

    (3) Be aware that there are HUNDREDS of combinations of settings for your Nevro that can be tried (more like tens of thousands of combinations actually) in order to find you relief. They can change the power level (i.e. the voltage). They can change which areas of your spine the power is sent to. They can "pulse" the power (e.g. 20 seconds of power, 20 seconds off) at any number of different pulse ratios. It has been a year and a half since my permanent implantation and I am STILL working with the Nevro rep to find the right settings.

    (4) And the final thing I would mention - which makes finding the right combo for you even MORE difficult - is that the Nevro causes side effects. Now if you skim this site you will see lots of complaints from people about these stimulators that are really just complaints about how the stimulator was implanted - that's not really the fault of Nevro, that's the fault of the implanting doctor, who doesn't work for Nevro. And you'll hear claims about how the wires have shifted, the battery failed right away, the wires pulled away from the stimulator, etc. And yes that happens, although I don't think it happens a lot. The "side effects" I'm talking about - which came as a complete surprise to me - is that the stimulator can not only remove pain it can CAUSE pain. The rep (and the doctor) will never tell you this, even after it starts happening to you. They have a more politically correct term for it (thanks to their lawyers I'm sure) - they call it "over-stimulation." I call it "phantom pain" - pain that suddenly appears in your body where you never felt pain before. Sciatica down your "good" leg. Abdominal and rib pain that make you think "did I just lift something the wrong way?" Groin pain. And it can inflate (artificially) the actual pain you came in to have treated (e.g. arthritis, lumbar pain, sciatica down your "bad" leg, etc). This generally happens when the power level of the stimulator has been set too high (or set to pulse "on" for too long a period), and the pain quickly dissipates when you turn off (or power down) the stimulator. So the game is - keep trying new settings and if you feel unusual pains, turn it down for a few hours or a day and see what happens. Problem is, trying to figure out if a new ache or pain is the result of the stimulator or simply some higher level of exertion you did in the last 24 hours (or worse, a fundamental worsening of your back condition). Oh and since the doctor will be pushing you, once you are healed and the device is turned on, to reduce your medication level, you will also have to figure out if your pain is due to the stimulator or due to having reduced your medication. It's not easy.

    *

    So do I recommend you get it or not? That's hard to say. I do believe the device can work. But you have to be your own best advocate - with the doctor and with the rep. Don't take no for an answer. And you have to REALLY pay attention to your body and your pain levels/areas. And you have to be responsive (i.e. turn the device lower if you suspect the pain was caused by the device and pay attention to whether that made a difference).

    Good luck, I hope you find the relief you are looking for. Feel free to ask me any other specific follow-up questions...

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    • Posted

      Thanks for your information here. I literally just came from my Dr's office where they were telling me about this NEVRO HF10. I honestly don't know what to think. I have not done the trial yet, but that's the first step. I suffer from chronic nerve pain from 2 failed/messed up back surgeries at L5-S1 and spinal stenosis, and have discs issues in neck.

      I have been using Fentanyl patch for over 11 years and now they want to take me off that, that is the ONLY medicine that gives me some quality of life.

      I have been reading stories of leads moving around, slipping and pulses, etc.. Things that can cause more, NEW pain and I'm trying to see what's what with this thing. The biggest issue I'm seeing over and over is the rep or company just drops you after selling it to you. There is no further help or communication and that's very bad.

      How is it still going for you? And thanks for your comments..

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    • Posted

      Hi James,

      Well at least do the trial - so long as the cost is approved and covered, there's really no harm. It's a minor insertion of some wires, held in place by a couple of stitches, with most of the device remaining outside of your body for the length of the trial. It's more inconvenience than anything else (you can't shower for a week, you have this three pound object hanging off a wire that leads into your back, etc).

      But if you are on a fentanyl pack and the doctor is telling you the patch has to go and your only hope is the stimulator, that's a rough choice. I really doubt that a stimulator can reduce pain as much as a fentanyl patch. Is he going to take you off the patch and replace it with a weaker opioid while you and the Nevro tech experiment to find a good set of controls to ease your pain? If not - if he is going to implant it and then take you off opioids right away that just seems cruel to me (forget about even the withdrawal symptoms, I just don't think that, if you are in THAT much pain, that the stimulator will be the equal of the fentanyl patch).

      But as for me and my experience - I'd have to say it is mixed. It's been 20 months since the device was implanted in me and I am STILL working with the Nevro tech to find the right settings. I've cut my meds in half and would like to cut them further, but these weren't hugely strong pain meds (just tramadol and gabapentin, which I am taking half of my original dose level now). That isn't even in the ballpark of fentanyl, and the stimulator has barely kept up with my med reduction. Also, I struggle a lot with "over-stimulation" - we just can't find the right settings to avoid it. But it is helping me - at least a bit. Good luck...

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    • Posted

      I had back and leg pain that would about have me in tears by the time I completed a grocery shopping expedition.

      I did the trial and it was obvious to me it was going to help but how much was hard to say. The leads or whatever pulled out on trial unit and it would give me one hell of a jolt so turned it off but as I said, it was obvious it was going to help ME, (only doing the trial can you judge) so I had it implanted.

      It was a godsend for me. Did it make me think I had the back I had when I was 20 years old? No, but it made things a thousand percent better than they were. I don't even bat an eye when it comes to having to hoof it through an airport or walk a good distance.

      Each person is different so the trial is really important.

      My rep has generally been pretty easy to reach and is willing to make changes based on my observations.

      My back injuries were due to a super bad MVA and I am glad I opted for the NEVRO. My rep showed me what the sensation is like on old school and other low frequency stimulators and I want no part of that.

      That being said, there are good doctors and there are bad doctors out there. It can be quite hard as a patient to find a good doctor sometimes. When I say bad doctor, I mean that they don't listen. You get your allotted 15 minutes and they want you out the door. They may be pleasant but if they get antsy when you are trying to discuss your issue, don't hesitate to find another doctor. There are tons of them out there. One of my GOOD doctors once told me, "Doctors are providing a service, and if you don't like the service you are getting, go find someone who will provide that service.

      You owe the doctor nothing as far as loyalty goes. You and your insurance company are buying a service from that man or woman and you should never forget that.

      The reason I comment about the doctor aspect of things is because if you get a bad doctor, his or her lack of interest in working the issue with your back will also be reflected in the stimulator.

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    • Posted

      thanks so much for your reply! i dont know if they will keep my on a few oxy 10s a day akong with it . but my biggest fear that i see A LOT OF PEOPLE saying is that they can not get the rep on the phone after its implanted to adjust bad patient relations with nevro rep ALSO - a lot of people are still on some amount of opioids along with it . so if you are still having to take meds, it makes me wonder why do it? i will take any relief but there becomes more scar tissue and chances of phantom pain - just honestly considering trying to remain on meds if i am going to have to take them anyway .

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    • Posted

      thanks so much for your reply! i dont know if they will keep my on a few oxy 10s a day akong with it . but my biggest fear that i see A LOT OF PEOPLE saying is that they can not get the rep on the phone after its implanted to adjust bad patient relations with nevro rep ALSO - a lot of people are still on some amount of opioids along with it . so if you are still having to take meds, it makes me wonder why do it? i will take any relief but there becomes more scar tissue and chances of phantom pain - just honestly considering trying to remain on meds if i am going to have to take them anyway .

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    • Posted

      you say "turn the device lower"....so i would have a program set in it, and i could turn the level of that program up and down??

      im looking into this procedure, and at first i was excited about the possibility of actually having less pain, and a good nights sleeeep!!! the more i read, tho, the more discouraged i get about it...😔

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    • Posted

      I've been diagnosed with CRPS 2 Full body...feels like the flu /w/102/3 temperature ( no actual temp ). it's 24/7 I just meet with a great Dr. his assistant was PUSHING THE HELL out of this thing. I'm in agony every moment. but I'm skeptical of this. it's been a couple of years...what do you think about this now ??? I'm hoping you see this, or if anyone has any suggestions/ reviews please don't be shy.

      thank you.

      Dane

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    • Posted

      Hi Dane,

      First I'm sorry to hear of your CRPS issues - my wife has suffered severe CRPS in her lower body for the last 9 years, 8 years of which she's been pretty much confined to bed which has meant she's suffered a lot of consequent side effects in addition to the constant pain.

      Three years ago we also researched the Nevro HF10 - in fairness to Nevro and the surgeon who conducted the implant I think they were fairly open about the effectiveness versus CRPS although understandably vague... They were open about it being most effective for spinal injuries/ issues and since CRPS is a less understood or more variable condition, the efficacy was less proven. Despite this - and the high cost - we had no other options for my wife so we agreed to go through the trial implant hoping for an obvious improvement as they indicated those patients that see a benefit tend to do so sometimes within a few days and certainly a couple of weeks.

      After trial there was possible a slight improvement in her pain levels, but nothing like we had been hoping for. Of course, once you've been through the trial (2/3 the cost and probably most of the discomfort) it's tough to back out without completing the implant, o that went ahead too. The brief story is that, at best, my wife had seen something like only a 10-15% reduction in her pain levels. Not enough to be able to reduce her pain meds (160-180mg oxy daily plus oramorph) nor get her from her bedridden state.

      Nevro and the specialist have been notably quieter since it was clear the implant was not a 'very' successful one, but they are still supportive.

      With respect to CRPS, I would be wary that the implant has less proven effectiveness than with actual spinal issues - my personal belief is that the CRPS my wife has may be neurological but NOT spinal.

      I'd be happy to write more about her experience with the HF10 algorithms and CRPS if anyone is interested - let me know. It's been a hell of a journey that I'd hate for anyone to go through.

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    • Posted

      I want to thank you for your reply to onlyraj. I received a permanent Nevro HF 10 implant about 6 months ago and like you I also thought the device had potential during the trial period. You have pretty much explained what I have been going through trying to find a helpful setting for pain relief. Since the implant, I have had good weeks and really bad weeks... along with pain free days and horribly terrible days... it's a mixed bag. Of course the next step with my doctor was spinal ablation, both sides of my spine, to help control persistent pain that he thought had nothing to do with my spine.... yea sure. But now that I am about a month from the spinal ablation, I can now identify the leg/hip pain due to my spinal issues no matter what program I put my remote on... it always shows up in the same place on my buttocks/hip and back of my thigh. During the trial it was my left side that never got full relief with some buzzing on that side. Now after the implant, the pain on my right side is never fully relieved with some buzzing on my right side. And trust me, the doctor does not want to admit there is a difference in how the leads were placed even though the buzzing followed the side that does not get full relief.

      I totally agree that there is such a thing as over stimulation. If I keep raising the level of stimulation, the pain may go away for a bit, but after an hour or two it will start to get worse to the point that no amount of stimulation will help. So I have learned to lower the stimulation to the lowest level on the program I am on, and it helps for a while.

      Now with that said, lowering the stimulation at night then raising it during the day seemed to work for a while, but as of this week, that magic has gone away too. So as I sit here on my sofa trying to figure how what to do next, I turned off the device completely for the first time since the implant... Googled for advice and found this website. And after reading what you wrote, it makes me think turning off the device for a while might be a good idea. It's definitely a trial and error experience so far. However, to some degree, I will say my Nevro rep has been somewhat helpful even though I get a lot of "I'm sorry to hear that".... lol, not the most encouraging thing she could say, but at least she calls me back within the same day and did tell me to try lowering the simulation.

      The only thing I am not getting from my rep, and I'm not sure she even knows the answer, is what each program does or which part of the spine it affects or the type of program it is as far as steady or pulsating stimulation. I do believe the programs that eat of my battery quickly are steady and the least are pulsating. But I have identified at least two programs that seem to help the most so far.

      So after saying all of this and still trying to dial in my device, I would love to hear more about how you have gone about "troubleshooting" your device to find the best relief setting for you. I tend to be fairly pragmatic and troubleshoot electronics for a living, but at times I feel like I am just flailing around looking for a solution. And I am just hoping you can help get me pointed in the right direction on how to go about adjusting settings in a way that was helpful to you. I know we are all different, with different spine issues and I'm no spring chicken at 70 years old. But I still ride my Harley regularly... thank goodness sitting on my bike doesn't effect my pain... and I still work for a living, so very active. Just would like to hear more about how you make adjustments by length of time and level... and how often you completely shut down your unit... if at all.

      Thanks for being here and Grinstoya

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    • Posted

      Everything you said is so true. i have a Nervo implant since Febuary 2021. i have yet to find the settings that is tolerable with out pain meds. My doctor said said after implant it was to reduce your pain level not to take it fully away. i had the stimulation turned off. my pain that was taking away measured 30 percent not 50 percent. i now have the AVN pain back with stimulation turned off. 05/05/21

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    • Posted

      This accurate and mirror's my experience with the device. I had it implanted 6 months ago and still trying to figure out the best commutation and permutation of the settings. Definitely a work in progress.

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    • Posted

      Thanks for your reply. I hope your wife finds some relief. I have CRPS in my foot from a hip surgery. I have the Abbott burst scs, but am in my 7th day of an hf10 trial, as the Abbott system no longer provides any relief. Unfortunately, the hf10 trial so far has not really helped either. Unless there is a big improvement in the next day, I wont get the permanent implant. A pain pump is my next option. BTW, while I think my Abbott rep did a great job as far as availability, it did start to feel like the program adjustments were stabs in the dark.

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    • Posted

      Seafarer123 I really appreciate how you laid out your assessment. I had the Abbott installed in 2019 and it hasn't worked once. Even though you've had pain in other areas, you haven't had to increase your medication. That is all I want, to be able to decrease my medication so I can go back to work. I can deal with phantom pain as long as the current medication works to alleviate it.

      I have to wear a Salonpas on my buttock every day and if I somehow forget or it comes off, my knee is so frickin inflammed and kicks my pain up to 9. Which is where my primary pain is located. I've had 5 MRI's, 9 injections, 3 EMR's and finally made it to the SCS. I'm scheduled to see a new Pain Specialist next month but I'm already seeing a specialist that could authorize/perform the surgery. My biggest concern is if Medicare will allow me to have another surgery.

      Thanks so much for your very informative assessment. Good luck and be well.

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    • Posted

      Interesting info....I too am trying to "dial in" the correct setting. I'm going to try some of the suggestions posted here..Sometimes I think i should have had the Laminectomy that may be the longer term help.

      Thanks for all the info posted

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    • Posted

      Excellent review. I personally had a Medtronic device implanted in 2017. It's been working optimally when I leave on when sleeping. Lately though I've felt my pain increasing. Had an epidural a few weeks ago. Another scheduled for this week. Then an oblation to follow.

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