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Issues that required removal of Nevro HF10?

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chrisw115
chrisw115

Hi y'all -

  I am so grateful to have just found this site and hear y'all discuss your experiences with the spinal stimulators.  I have been in pain mgmt tx for 6 years after a catastrophic accident.   My anesthesiologist/pain drs pushed for me to get a stimulator implanted in my first year but I read some horror stories and now my dr is saying this Nevro HF10 is much superior to those earlier products and treats the pain in a more complex, fuller way.   

  I wondered if anyone had needed to have their device removed?  My dr said this device (small device he said...) would be implanted in the flank area, above the fanny and that caused much fewer issues than devices installed alongside the spine.  I read the horror stories about removing those but now read that some of you are having pain in the flank site too.

  My dr does not provide hardly any info and everything else I read seems more like advertising until finding this forum.  I'm curious about how this really helps and what it means for your life.  I would be so appreciative if anyone would answer some or all of my questions.  I know I have a lot so I understand it may be a lot to ask.   Here are some of them:  Do you have an outside device that is attached to you?  This may sound silly, but are there wires coming out of your implant area?   Can you shower, swim,  normally?  Does the device poke out or look noticeable if not dressed or dressed?

 I am scheduled to  have my second radiofrequency lesioning on my lower back in four weeks and am scheduled to do the 5-day ketamine outpatient treatment in mid-May.  I have had at least 10 nerve injections to try to relieve pain and only have ever found minimal relief, all while my CRPS and nerve damage worsens.  I take narcotic pain meds and have for 6 years now and would LOVE to get off them or lower my levels.  I returned to grad school two years ago and am about to graduate next month and the increased mobility caused the need to increase pain meds and increased my pain.   i am so worried about the ketamine tx and know that this is not part of this thread, but my point is that I am desperate to find relief.  I don't want to turn to this "new technology" version of Nevro and have more hassles, less money, and the same amount of pain, so your thoughts and insights are much appreciated.

 I will continue to read and appreciate everyone's honest and forthright threads and responses.  I am learning more here than in several dr's appts!

  Thank you and best wishes to all of you in your pursuit of a minimized-pain life!

Chris (in Georgia, USA)

10 likes, 107 replies

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  • colin63763
    colin63763 chrisw115

    Posted

    Look on nevro corporation site and you can find a lot about their implant , also there are links to uk medical reasearch, at the begin you have a one week trial or i did to see if you get any reduction in pain , the wires are feed up your spine in a small insertion at the base of the spine , the battery and computer unit is placed outside held in place be a dressing, if you go ahead with implant it is fully implant in your body just below the skin mines in my buttock, you have to avoid doing certain thing after wards they should tell you, while your body tissues grow round wires to hold it in place . As for removal i dont know ,mines been in 5 years so possibly the battery and computer components would be removed as for the wires if not causing any problems i would image they are left aloneif not another operation i think.

    please note wires are removed after trial very easily a nurse toke mine out, i just lay front down on couch she said breath in and slowly let it out and gently pulled them out did not feel a thing hope this answers some of your questtions

    • kay26560
      kay26560 colin63763

      Posted

      Someone mentioned MRIs. Just a bit of advice. its very hard to find an mri machine that will allow a stimulator patient to receive an mri at their facility. I live in a small town the nearest place I had to go was Chicago which was 5 hours away or go to Missouri which was 4 hours away. Even then the Nevro representative had to be there and completely turn off my device before they would do the mri. Needless to say to coordinate the whole procedure took a couple of weeks and that was after finding a place that would do it. My only other option was to have a bone scan and CT done instead of an mri. so think about that before getting one implanted.

  • Bonnie_Blue
    Bonnie_Blue chrisw115

    Posted

    Hello Chris and welcome. I myself have only just joined too. ( couple days ago). And already have learned so much from fellow sufferers  I'm not going to talk about me. Because you seem to be in such a worse state. All the things you mention I don't understand. But pain is pain whatever the explanation. You live in US and I live in GB. So there's bound to be a clash of understandings. Congratulations on your continuing pursuit of education, I so admire you. It tells me you're someone that puts up a fight for their goals. However, it seems the system have let you down ( badly) to be in so much pain and discomfort after all these years is unforgiving.

    you say you had a catastrophic accident 6 years ago. Where's your insurance provider? Have they helped in your after care? If you didn't have a health care policy. What about the state. They have a duty of care to provide your care needs and that includes pain relief. I may be talking a load of tripe, because like I said I'm from UK . I'm just assuming there's a welfare system  in place too in where you live.

    kind regards 

    Bonnie 

    • crystal1551
      crystal1551 Bonnie_Blue

      Edited

      Hi Bonnie,

      I noticed this thread and comments are several years old and what I say now may or may not have been applicable for Chris then or now, but I can tell you that there is indeed a welfare system in the U.S., but there are many, many people who live below the poverty line and yet are deemed ineligible for benefits. I have endured severe sciatica for about 4 years now and during some of that time, I was seeing a doctor at a free clinic and even had several months of physical therapy, but the medications he gave me did nothing for the pain, nor did the physical therapy. I told him every time that my pain and the numbness, burning, tingling was only progressing, not getting better at all and he never sent me for any testing or to an orthopedist or neurologist and never even offered to try a different medication, just kept giving me neurontin and flexeril. Unfortunately, he was the only doctor at the clinic and still is, added to the fact that the clinic is only open one day a week and I live in a very rural area. Free clinics are very few and far between here.

      Healthcare in the U.S. could and SHOULD be much better and more accessible for EVERYONE who needs it, but sadly, that is not the case. There are so many people, old young and all ages in between who cannot afford health insurance due to low wages and yet are ineligible for medical benefits and are forced to either completely forgo ever seeing a doctor or choose between seeing a doctor and paying for the visit, any lab tests, xrays, etc and medications or buying food, paying rent/mortgage, utility bills.... In order to see a doctor and pay for treatment, we must sacrifice something else...

      My only hope is that the new president will bring about the change this country needs in order to ensure that every citizen receives a fair and living wage, affordable healthcare, as well as safe and affordable housing, food, water, etc.

      I know so many people whose homes are in serious disrepair, rotting roofs, floors, old, outdated electric wiring, inadequate heat and water. Human beings should not be forced to live in conditions like this, but it happens every day. I have firsthand knowledge as to why poor people become depressed to the point of being suicidal. The system is such that poor people don't matter and if the government does anything at all to help, it is the absolute bare minimum. I know people who receive food benefits but not even enough to buy enough milk or meat to last half the month. Quite honestly, it wouldn't even cover one bag of groceries, so not enough for even one day for most people. Even a single person can't but enough food for a whole month when all they have is maybe $20, and in some cases, even less, for the month.

      The government has been slightly more generous with food benefits during the pandemic, but there has as yet been no change to healthcare, even as thousands suffer and die. My situation is worse than it was 4 years ago and I am no longer able to work so that now we have only a single income and I applied (again) for Medicaid less than a month ago, but still not eligible. It's also extremely difficult to obtain disability benefits without a lawyer and even with a lawyer, it can take years and the attorneys get a chunk of the benefits if you are deemed to be disabled and happen to receive benefits. Most don't get paid if they lose the case and you don't receive benefits. That's about the only positive...unless you're actually approved and receive benefits from the time you first became disabled, but again, though a person on disability does usually receive full medicaid, unless they have other income, the disability benefits usually aren't enough to pay all of their bills every month. They're in a slightly better (financial) position if they own their home and property and have no mortgage or rent and if they have a pension or other savings, but for someone who has no other income except the disability benefits, it's almost always insufficient.

      It's sad and might be hard for people who don't live here or those who haven't experienced it to believe, but it is 100% true. You almost have to be wealthy to survive here and most of us are not. America is poor, plain and simple. The glamour and luxury are only for the elite. Celebrities and politicians. Most average people struggle every day. Many are hanging on by a very thin thread that could snap at any moment.

  • iellen32
    iellen32 chrisw115

    Edited

    Here from GA US,

    Whatever you are going through I send to you all the hope and certitude for the future.

    My warmest wishes, dear Chris.

    🌺🌺😊

  • kathy07828
    kathy07828 chrisw115

    Posted

    Hi Chris! I'm about 4 states above you in NJ where it's getting cloudy again and only reached 34°. I just have to say that with what you're going through, I can't imagine how you managed to get through grad school! Even with my percocet I can't walk any distances, as it hurts just to stand! I'm constantly amazed and in awe of the people like you on this site, tat mnage to keep a positive attitude despite the fact that they're really miserable. I decided not to get the Nevro as my dr had suggested after reading and making many notes from the comments on this site. The Dr's here in the US don't seem to know anything needed to decide whether a patient would be a good candidate for the Nevro or not. They're just installing them to see if that person is part of the percentage of the population that finds relief from it. We also are not given he thearapeutical support that seems to be the norm in the UK. My pain Dr doesn't plan on following the progress of is patients with the Nevro and compose a study base on his findings, so as to more adjusted understand who finds pain relief based on what I like to call, their pain profile, and which conditions put some patients more at risk to get failed results from it. Dummy! I urged him to do so as they've unplanted about 30 of them so far in the past couple months they've been using it. I can tell you what comon criteria for failures with the Nevro I've noted reading through these forums. It seems that those who also have fibromyalgia, some types of arhrits, are a Highly Sensitive Person strike out with these. I've also noticed that the who have a lot of scar tissue don't see to do well, with the body rejecting the battery. The Nevro battery is larger than the others, being bigger than my cell phone. (I have one from the Chocolate series which is not a smart phone.) The Nevro seems to target radicular pain, but is not necessarily helpful with generalized low back pain. You will be given a trial period at first where the electrodes,(wires), are inserted up your spinal column. Many posts I have seen report that they do very well during the trial period but not so well once it is implanted. I suspect that this might occur if they have one of the conditions I mentioned previously. Some people have reported that it's helped their neuropathy. If you don't have.any of the conditions I mentioned previously, this might really take a big bite out of your level of pain. I would suggest that you follow it up with a pain management program. Although my Dr didn't know about this, it seems to be extremely helpful to the people who had a Dr. that was on the ball and more proactive in seeing that this would be as successful as possible. I hope you find this helpful, and wish I could give you more info. Sending a prayer your way ,
  • mel77
    mel77 chrisw115

    Edited

    Hi Chrisw:

    I am scheduled to a pain doctor who specializes in the Nevro.  I believe it is a consultation visit but this will give me a chance to get further information from him and ask him questions about the Nevro.  If you look throughout this forum, you will read many posts about people who have the Nevro and some that wish they never got it.  Many of the complaints I have noted are the battery overheats and causes burning.  Whether that has been fixed or not remains to be seen.  Meanwhile I will research it further.  Many other posts I read was mainly from the UK.  I noted that the Nevro manufactured in the US, there was a fix.  I am glad that you are asking these questions as it gives me ideas of what to ask the doctor. I looked ketamine so I wouldn't bother you about it.  I didn't know beforehand that it is used for depression.  Is it a serum uptake type or other type in the class of anti-depressants.  Here is a thought.  Why not check the white papers that doctors write about these things of nerve stimulators and there are other resources that you can look up.  I am unable to name them here as any indication of a link can be considered the message here will be flagged.  We can talk by PM if you want to and then I can give you some leads on it. I have the old type of nerve stimulator which buzzes to no end when it is at a higher level.  The battery is built in and lasts from about 4 to 5 years.  I would imagine how high the output level is at as it takes more current and battery drain.  So, in essence this one I have will have to be taken out anyway.  This willl give me the opportunity to check out the newer one.  I deal with pain every single day and I always hope it will be at a lower level at times.  It happens but rarely.  I have to take pain meds as well for peripheral neuropathy, spinal stenosis and peripheral neuropathy.  Lately I have cramps in my legs, arms and fingers..Meanwhile, even when the cramps subsides some, a lot soreness prevails until the next episode of cramps begin.  This has been going on for sometime now.  I like to support people who have these issues and pertain to mine as well.  I learn from you and possibly learn from me.  Everybody here learns from one another,  So, take care and keep me posted of what you are considering.

    My best to you,

    mel

    • iellen32
      iellen32 mel77

      Posted

      Hi Mel. After a long time since you were busy writing your replies as fast as you could, today we meet here and I am glad for that,

      Sorry for the dicomfort you are going through due to your symptom which I wish you will get here the insights you look for, as you are preparing to see your doc.

      Wish you get the answers you need and wish your outcome will be alright!

      Take care 🌺

    • colin63763
      colin63763 mel77

      Posted

      Hi mel77

      i was on the original trials held at st thomas hosp in uk and haii had very few problems,these consisted of ,,on day of implanta soft ware issue on setup which resulted in uncontrolled current increase from laptop connection, easliy resolved ,mains charge unit i,m on my 3 Rd unit,and finially a remote control which also my 3rd which is the size of a ninty seventys mobile phone , causes quite a bulge in my pocket. As for internal battery life , i charge every day, my last annual chaeck was august 2015 shows battery at 90 percent and this is my 6th year no one know howlong the battery will last but i think at least 8 yrs based on mine

      if your not in uk or recive free healthcare you my want to consider the costs or is this covered by manufacturer, at the end of day remember its not a fix all and does not work for everyone

    • kathy07828
      kathy07828 mel77

      Posted

      Hi Mel, A quick bit of info on the Nevro that my Dr clarified for me. The manufacturer claims that they are safe to pass through an MRI machine and security at the airport, however, it still has not been approved for this here in the USA by the FDA, so, I'm not really sure what the status of this is. You might want to ask your Dr about this. Good luck with your appt. tomorrow. Let us know how it went. I hope it reassures you and you get all of the information which you're seeking. ~kathy
    • lindagkelly
      lindagkelly mel77

      Posted

      I too have heard of the battery overheating during charging and burning. I was in this forum about 3 years ago when it was new to UK and a lit of patients took the battery out because the size and shape and placement of the battery was painful. My pain mgmt doctor here in the US (in the desert in Arizona - hello UK!) does not recommend the Nevro.

    • cona48748
      cona48748 mel77

      Edited

      Hi Mel,

      your condition sounds alot like mine.

      I have had 4 spine surgeries.

      I had the Nevro back stim planted 2 1/2 years ago and have have alot if problems starting @ least one year ago. Mainly burning in

      my lower legs.

      Been in Dr's office with Nevro Rep several times to re- adjust level and frequency. Then asks to chart the changes if any.

      This has been getting very frustrating.

      Considering getting removed. I was weaning off of pain med too. Only can go so far. From 5 Norco to 1 and a half..that has taken me a year to do. Any way has anyone else experience burning legs etc.?

      Regards,

      Cona.

    • MondayLisa
      MondayLisa cona48748

      Posted

      Hi Cona,

      I am so glad (not in the literal sense) to hear that I am not the only one who is not getting relief from the hyped up device.

      This is so frustrating.

      I'd be happy to discuss further. My keypad is acting up at the moment, unfortunately.

      Kind regards,

      Lisa

      Nevro HF10 Jan 2021

  • mel77
    mel77 chrisw115

    Posted

    Hi chrisw and to add colin and iellen and kathy and whoever else is here.  I thought I would do this all in one time as everyone has commented on the nevro.  Thanks for your input.  It helps me writing out questions to ask the doctor.  Since the nevro and other nerve stimulators are quite expensive and who knows how much insurance would pay, that is the determining fact for me whether I should go for it or not.  What complicates matters are my peripheral neuropathy, spinal stenosis, nerve damage and fibromyalgia.  My case called by my doctors is COMPLICATED.  It's possible I will be on some kind of biologic medication but have to find out by what doctor says about it. It is so hard living in a life with continual pain and get only some relief by my pain meds.  The thing is pain meds just mask the problem but no matter what, it at least helps alliviate some of the pain.  Isn't that what we all want?  Of course it would be nice to have a cure but some can't be cured but only prevent it from getting worse.  You try day after day to get along with your life but from the moment I awake from just a few hours sleep, the maneuvering out of bed becomes a chore.  Not only movement is slow but you also have to be careful that cramping doesn't start.  Meanwhile you are still tired because of broken up sleep.  In addition I also have osa and rls.  Just getting the strength to go on the rest of the morning is certainly not easy for me.  After I take my first pain pill, I really start to feel a little better but in a couple or so hours, the pain starts to increase again.  So, my doctor prescribes to me a 30 day supply taking 4 per day (IF NEEDED)  I like the way they say if needed.  I usually take 3 and day now and skip it when I go to bed.  That leaves me some extra to take for breakthru pain.  Of all the pain meds I have been on, oxycodone seem to work better combined with a acetmenaphin.  So, I don't know if I am wasting my time pursuing the nevro.  The one I have now is about 3 years old and eventually the battery will have to be replaced.  Since it is isn't cut out to be what I would expect, I assume it best to just remove it.  Then I can take a MRI again.  So, there it is.  Hope everyone here will stay well with minimal pain and take care.

    mel

    • kathy07828
      kathy07828 mel77

      Posted

      Hi Mel,

      This site drives me nuts! I had almost finished my reply to you when the whole thing disappeared! OK..'Take 2' as they say in the movies. First, I want to say that I'm sooooo sorry that you're having such a miserable time of it. I wish I could fix everyone here with a big hug. Are you from the UK or US? There is a difference in the healthcare offered by them. In the US, if you're on Medicare, I believe that most of the cost is covered, but you would need to double-check with your Dr on this. I'm also not familiar with what osa and ris are, and would appreciate a little explanation on them so that I can better understand your conditions. I have also been given Percocet for my pain, which is oxycodone and Tylenol. I share serious side effects as my mother also dfid from codeine, so that eliminates many meditation for me. I am also on 10-325 mg at 4/day, and need that many. I find sitting on the ice bag when this fails me to be very helpful. Other than that the only medication I take to help is xanex. Chronic Pain causes much anxiety for those of us that have to deal with it 24/7, never knowing when something is going to set off other things like the fibro you and I suffer from. Although my pain Dr doesn't seem to understand this and says that anxiety is a mental health condition and something he doesn't deal with, thank goodness my GP sympathises and continues to give me an Rx for Xanex. I find that I can't go to sleep without it, and it really helps. Muscle relaxers make me sleepy, but don't really help get rid of my muscle spasms. They also make me feel a tightness in my chest due to the other two medications I take, so then I lay there worrying I'm having a heart attack! So, I rarely take them. You say that you currently have a low frequency SCS, so I would really hope that this could be removed before implanting the Nevro, which won't have any buzzing because the electronic pulses are high frequency. I've been told that when the battery overheats, the unit automatically turns off, but I haven't read a confirmation on this from anyone on this site yet. I think that most probably this is being felt by people who are Highly Sensitive like me, and who are having one of their over reactive days, where their nervous system is interpreting things incorrectly, causing the body to react to a pain that isn't there. I have this occur when my PT puts the laser pad on me, and if I'm being reacive that day, I'll get burned even though it's not really that hot. (I'm usually having a fibro day then as well, which is another disease from over reactive nerves.) Unfortunately, most of the people that I think use this site seem to have complicated conditions and many bad outcomes. Thank goodness for Colin, because he shares a different side of the story with us to help balance the information we're seeking. I wish more people like him checked in on the site to offer their feedback as well.. Well, I wish you a good, productive office visit. Please let us know how it goes. Sending a prayer your way, ~kathy

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