Nevro, and my pain, no help.
Posted , 18 users are following.
my Nevro was installed in July, 2017, On the advice from my neurosurgery Doctor, he referred me to a pain specialist an he installed the Nevro H10. I have had 8 back surgeries over the last 3 1/2 years, the last ones January 2018 which L1-L5 was fused. I apparently have had a lot of nerve damage from the surgeries. in January 2018 I had to have the Nevro battery moved from my right side to the left side because it was laying on my 11th. rib and was causing a lot of pain. So when the fusion was done in January 2018 my surgeon remove the battery from my right side to my left side. now according to Nevro whentrying to program trying to program the unit There is a lead missing? so I guess another surgery to replace the missing lead. What next? The Nevro has not helped very much as far as I can tell. seems like they have been a problem after problem trying to get this to work as advertised, and with the high cost and the surgery you have to endure the thing ought to work. I have taken so many hydrocodone's people probably think I am a drug attic, I am currently on 15 milligrams of hydrocodone (3 per day) and I am still in constant pain, I have a stinging in my very low back over my left and right hip that feels like a bee is stinging me constantly plus a lot of low back pain that at times I just want to cry. so for those people that is considering having the nevro Stimulator uninstalled research it completely. you may save yourself a lot of pain and money. I have read where people were asking about charging the battery, yes you need to charge it daily I was told by NEVRO representative when it gets down to one light on the charging side it is not working. I was charging every three days but I was told that is incorrect charge it every day for the rest of my life or as long as I have it installed. question, is it worth it?
0 likes, 19 replies
tamra73559 ddry999
Posted
HI, I had a St.Judes stimulator implanted 3 years ago I wish I had never had it done. I've been up all night in so much pain I couldn't stand it. I've had 3 surgeries (including the stimulator) I had disc replacement with a cage above at L4-L5 S1. That surgery was done in 2006 with no relief. Ionly leave my house for dr appointments, and spend the rest mainly in bed. On a good day I can get up and shower and that's about it. I've had so many injections in my back to even count. I stopped having them when I found out the steroid is not approved by the FDA for injections in your back. The FDA is now requiring that the manufacture state that on the label. One of the side effects is adhesive arachnoiditis. This can result if they puncture the arachnoid membrane surrounding the spinal nerves, or from scar tissue that forms from many surgeries. There is no cure for it, and according to the people I have talked to in pain groups, it's the worst pain ever. Many people have good luck with the trial for the stimulator (as I did) but not so much after the actual implant. I would have mine removed except I don't want to have another surgery. You're right, people should do more research on them before having them implanted. I was so desperate for pain relief I didn't really research it before I had it done. I'm sorry you have to deal with this now, but please do some research on arachnoiditis to see if you have any symptoms. Best of luck to you!
ddry999 tamra73559
Posted
Thank you for reaching out, I know how you feel and hurt, first hand. I feel like I am up against a wall with no way to turn. day in and day out I am in constant pain taking 15 mg oxycodone. I hate living on pain pills but my choice is very limited since the spinal stimulator does not give me much relief. what are you going to do about your situation? Good luck and hope you get to feeling better with less pain.
Seafarer123 ddry999
Posted
I had the Nevro HF10 implanted (paddle version) in June 2018. It has worked very well for me. The worst problem I had with it, at least initially, was what they call "overstimulation," which I prefer to call "phantom pain." I was told this reaction occurs in about 30% of patients. The stimulator, when powered high enough, can cause pains in areas that weren't previously painful. I was very discouraged by that at first but then somehow my body just got used to the stimulation and I don't really feel the phantom pains all that much any more.
I've been able to reduce my pain meds down to about a third of what I was previously taking and have cut my pain scores in half. We are still experimenting with programs to see if I can cut my pain meds (and my pain scores) even further. The one negative I've noticed is that even mild aerobic exercise (e.g. fast walking for a mile or two, or doing steps) triggers back pain but otherwise if I stay sedentary my pain is vastly reduced.
I haven't had the level of serious back damage and surgeries that many of you have had. I've had one back surgery (L4/L5 laminectomy and discectomy) eight years ago which was successful for several years but then started to fail, and added to that I started to suffer painful osteo-arthritis in the last two years. The HF10 has been very helpful for the arthritis, perhaps a little less helpful for the sciatic pain (although the sciatic pain, prior to the HF10, was mild compared to the arthritis pain).
One other point I would mention: I had the battery pack surgically inserted in my butt not under my ribs. While I occasionally feel a slight pinch in that area, and recharging can cause a slight burning sensation (very mild), otherwise I feel no inconvenience from having the battery pack in my butt cheek. Yes it IS annoying to have to recharge every day (I tend to recharge every other day and that works for me but I wouldn't let it go uncharged for three days) but that is a small price to pay for pain relief, and for reducing the use of opiates.
I would also remind those who get the HF10 that there are HUNDREDS of programs your technician can try with you so don't give up too soon.
pam06932 Seafarer123
Posted
since you're fairly recent recipient of the NEVRO UNIT, would you do it again?
I'm discussing the trial with my DR currently in hopes of reducing low back pain so I can actually walk more than a couple hundred feet. I currently manage my pain to a tolerable level with a lot of sitting, homemade HEMP CBD isolate, abt 200+mg a day with pain terpenes added, an ALEVE twice a day, the wiTOUCH Tens unit (pre-ALEVE UNIT) and emergency opiates. I thought this spinal cord stimulation might actually allow me to join the living. The DR's trial goal is to see if I can actually walk without debilitating pain while on my current pain regimen.
If the trial manages that, based on your story, do you see me being able to reduce my meds. BTW I make my own HEMP CBD because I realized two things once I was approved for Medical Cannabis 1) it is outrageously expensive & 2) product consistency was highly lacking. Surprisingly I do pretty good on my pain management as long as I don't walk.
I just don't know if I'm opening a can of worms considering the SCS procedure.
Thoughts from any of you would be greatly appreciated
Seafarer123 pam06932
Posted
Hi Pam,
Sorry to hear you are in pain. I'm very much unfamiliar with medical cannabis and terpenes (had to look that one up), but otherwise your pain medication regimen sounds really low. Have you tried tramadol and gabapentin? Or epidural or facet injections? The only reason I ask is that surgery is invasive and the stimulator should be a last resort operation. I learned long ago not to "take a stand" against moderate pain meds on principle, not if it meant round the clock pain. I'm not saying something like oxycodone is okay, or even hydrocodone, but there ARE milder opiates and even non-opiates (like gabapentin) that can do a good job relieving pain. And you can take a LOT more NSAIDs than you are now taking, if done under doctor supervision...
But if you are convinced that the stimulator is the only choice you have at this point, I can answer your question as best I can. I would definitely redo the stimulator operation, although I feel much more knowledgeable about it than I did before the operation. The emotional hype from the manufacturer is pretty strong (pictures of people playing tennis), and modern US doctors don't have time to spend talking to you about all your questions - both they and the manufacturer seem to want to get the system into you, which gives them a bias.
If I could go back in time and advise my pre-stimulator self I would say a few things. First off, the version of the operation with the "paddles" is equivalent to a full back surgery - I would have mentally prepared myself for that (if you aren't getting the paddles inserted then it is a fairly simple procedure). I would also have insisted on a longer trial period, one that allows me to do a bit of exercise to see if not only could the stimulator tamp down my sedentary pain but if it could tamp down my pain from a more rigorous activity schedule.
I've been happy that the stimulator can reduce my pain significantly and has allowed me to reduce (but not eliminate) my medication usage. I wasn't happy, though, that I am still unable to be as active as I would have hoped. I can walk maybe a mile, maybe two, at a moderately fast clip, every other day, but more than that and I pay for it with back and leg pain that the stimulator doesn't reduce well.
So it's made me better and reduced my meds which is good, cause otherwise I was about to ask for an increase in my meds to a more powerful level of opiate, and this has allowed me to actually reduce rather than increase. But I won't be running any 10Ks anytime soon and I still feel a good bit of pain if I go on a trip with luggage and a lot of walking.
If I were you, though, I'd remember that it's a whole lot easier to swallow a couple of pain pills every day (if that can resolve the issue) than to go through the inconvenience and perhaps only partial success of the stimulator. Definitely do the trial and REALLY test it out - make sure you feel serious pain reduction during the trial or demand that the trial be extended so that you can be sure...
vivian46759 Seafarer123
Posted
Hi, I just came across this discussion!! It's wonderful to read comments from people with the same SCS as mine!!
I now understand some of my issues are normal and not just me. I'm 6 weeks and 4 days out of surgery and had questions about the SCS . The "team" has not returned any calls to me since week 2 and I've grown worried that I had no one to talk to about the SCS.
After reading the stories I understand why sometimes I feel great and can skip my afternoon tramadol but sometimes I over do it and feel my pain just as bad as I did before the SCS.
It's great if you're doing light housework but no trips to the courts for me!!!
I had hoped for 100% but I'm getting 75% or somtimes 50% reduction in the over all pain. Charging is not a big problem, I charge at night watching TV or reading a book and I too charge every other day!!
Understanding the truth, that it helps with the pain NOT elimates the pain has been an eye opener but I would do again without a second though!!!
i just wish they would call me back!!
ddry999
Posted
I am glad you re getting relief from the Nevro Stimulator, You are the first that I know of that had the battery installed in the butt area, and yes, its a pain(no pund) in the butt to charge everyday for the rest of your life or as long as you have the Nevro installed. I am not getting much relief and I take 15mg. of oxycodone two to three times daily plus a muscle relaxant, and that seems to help. How many programs did you try before you found one that works for you ? Its been over a 16 months and still no luck. I have only meet the nevro reps about 4 times to change up the programs. Thank you and good luck.
ken2505 ddry999
Posted
I have had the Nevro since December 2016
I have so much back, hip, feet and leg pain I have trouble walking without it
It relieves pain from my hips and legs the lower back and relieves the pain from the neuropathy in my feet
you can have an MRI I have had 4 done since 2016
I recently had 1 done 3 days ago and
between laying on the hard surface and having the Nevro off when I got off the table my hips and legs hurt so much I could hardly walk
I have great difficulty walking without the unit
Dr McRoberts recommended it and implemented it.
The day before the implementation I could only walk 1200 steps before the pain stopped me. 2 days after the trial implant I did 5000 steps with a reduction of 80% of the pain
The technicians at Nevro are amazing. they will return your calls in 24 hours
I've received replacement remotes and charging units within 24 hours
if I need the unit adjusted they will do it within 1 or 2 days
they have adjusted it more than a dozen times
they now have a new program that has high and low combined and it works incredible for both my back and my legs and the neuropathy in my feet
vivian46759 ken2505
Posted
i'm not sure but my "team" hasn't returned my calls since my 2 week mark!!!
I've called several different times but no one ever calls me???
They never changed my setting for the day of surgery, 6 weeks and 4 days ago??
Not sure if that's normal???
The pain has been reduced 80% to 50%, the more active I am the less it seems to work!!!
Glad to talk to others that have SCS!!!
maureen48741 vivian46759
Posted
I'm sorry to hear your team is not returning your calls, had the same problem in the beginning. The people answering the phone were extremely incompetent from the start and couldn't explain anything about the device, just kept saying the pain would go away. They told me to adjust it myself, she said just hit all the program buttons and find the one best for pain.
When I hadn't heard from anyone for a couple of weeks, I called left a voice message stating I wanted a call back from the Nevro rep who was there at trail or the rep who was in OR with my doctor, then I called the surgeon office to complain about everything. Did I get a response, so just keep calling and complain as loud you can. Hope this helps.
sjt1212 ddry999
Posted
I've had the HF10 now for a couple weeks, maybe not long enough to get good results.
My main complaint so far is the charging system, not having a good experience.
colleen03889 ddry999
Posted
Thank you so much for sharing your experience! I also have been on pain medication, for a very long time. Today the pain specialist strongly recommended this SCS. Almost sounded offended when I began asking him questions. Your honesty & openness about your issues with this devise is very helpful while I research. I wish you the best and again, thank you!
larry2628 ddry999
Posted
I am so sorry to hear you're in such bad pain..We're thinking about you. I'm in much different shape than you but pain is a universal constant I have found. I've had 2 back surgeries. Both seemed to help for a year or two then things changed for the worse.
I have no idea what your issues are or what you've been through the only thing that pops out at me is how little pain medications you're taking relative to what myself and others I'm aware of are taking. That's usually a personal choice and I really understand not wanting to go that route or increase your dosage. Others absolutely can't take them. I hate opioids, they make me spacey, tired, nauseous and itchy. Add to that the constipation and it pretty much screws up your day. However they do 'help' with the pain to some degree. I cant imagine going through all the back pain I've had without the drugs. However now that I've found the HF10 Spinal Cord Stimulator (Nevro) it appears that much of that may be about to change at least I pray so. I pray for progress in your case too my friend. You can lose sight of the fun in life with all that constant pain. Maybe it's time to get another pair of eyes on your case? As a I said I know nothing about your situation, Just well intentioned remarks. Good luck.
larry2628 ddry999
Posted
I am so sorry to hear you're in such bad pain..We're thinking about you. I'm in much different shape than you but pain is a universal constant I have found. I've had 2 back surgeries. Both seemed to help for a year or two then things changed for the worse.
I have no idea what your issues are or what you've been through the only thing that pops out at me is how little pain medications you're taking relative to what myself and others I'm aware of are taking. That's usually a personal choice and I really understand not wanting to go that route or increase your dosage. Others absolutely can't take them. I hate opioids, they make me spacey, tired, nauseous and itchy. Add to that the constipation and it pretty much screws up your day. However they do 'help' with the pain to some degree. I cant imagine going through all the back pain I've had without the drugs. However now that I've found the HF10 Spinal Cord Stimulator (Nevro) it appears that much of that may be about to change at least I pray so. I pray for progress in your case too my friend. You can lose sight of the fun in life with all that constant pain. Maybe it's time to get another pair of eyes on your case? As a I said I know nothing about your situation, Just well intentioned remarks. Good luck.
sam4everinPAIN larry2628
Posted
Turned 60 this year. Had many years of jobs which were very physical. Started having pain in my lower back around 2006. Doctor said it was arthritis. Over the next years I must have done something to cause the pain to get worst. Had my first MRI in 2014. It showed herniated disks. Doctor prescribed some pain meds. The pain just got worse the next couple years. Had another MRI in 2017. The herniated disks had become larger. Went to a "pain management" specialist. He did some kind of burning the nerves. That worked great for a couple of months until the nerves regenerated. Right back to the same amount of pain. The specialist did the procedure again. Same result - lasted a couple of months. I needed something more permanent. Went to a neurosurgeon. He said my back was not bad enough for him to operate. A couple more years on pain meds. Told my regular doctor I needed to get off the meds and get back to work. Insurance required me to go waste time in "physical therapy". I lasted about 5 weeks. It did nothing to relive the pain. Actually made it worse. Next came another neurosurgeon. He would not see me until I had a new MRI. When I saw him, he said the same thing as the other neurosurgeon. It was not bad enough for him to operate on me. He sent me to another "pain management" specialist. At first he gave me some type of injections in my lower back. The first session lasted about 2 weeks until the pain cam back. The next session lasted about 3 weeks. I saw him again about 1 week later, thinking he was going to give me another injection. NOPE. He said he did not like giving them too often. I asked him what else he could do. Surprise! He said NEVRO SCS. What? Will it END the PAIN? "Sure., probably.., maybe..., it might help...." he said. A few months later I had the "TRIAL" surgery. MAGIC! UNBELIEVABLE!! FRICKING FANTASTIC. I had no, I mean NO PAIN for the week of the TRIAL. Nothing gave me pain. NOTHING!! Just had 1 minor adjustment. I could whatever I wanted to and was PAIN FREE. I thought this SCS was was going to give me my LIFE back. I could not have been happier. I could not wait to get the permanent implant. That took what seemed like FOREVER because of COVID. Finally had the surgery in April 2020. This is what I needed. This WILL make life good again. THAT IS NOT WHAT HAPPENED. I went through the first set of programs. NO relief. Went through the second set of programs. NO relief. Went through the THIRD set of programs. NO RELIEF. This has been going on for a YEAR AND A HALF. I finished the SEVENTH set of programs about a month ago. STILL NOTHING!!! A year and a half. NO PAIN RELIEF!!! NOTHING. I thought this SCS was going to give me my life back. MAN, was I WRONG. I asked the NEVRO rep and the doctor WHY did I have such a GREAT "trial" and THIS is what happens?? I just DO NOT understand. Well, sometimes this (SH*IT) happens, is what they both told me. I AM CRUSHED!!!!!!! I should have made another appointment with the doctor and the NEVRO rep. I just can not do another 3 months of having to go through another set of programs and having to charge the SCS every day. What, for nothing? I am so disappointed. Disgusted. Depressed. Yea, that is another thing the doctor told me, He actually said it was MY FAULT that it has not worked. He said I (CAPITOL I) was not letting the SCS WORK!! WTF????
I can not do ANYTHING physical without it causing me PAIN. I can not lift or carry anything more than about 10 pounds without it causing me pain which lasts for a couple off days. I can not sweep, mop, vacuum, mow the yard, rake leaves, or anything that causes me to move from side to side. No bending, stooping, or kneeling. If I stand too long, if I walk too far, if I sit too long. I have had to tell my 80 year old mother that I can not do any more "projects" around her house any more. I am basically useless. I feel worthless. All the things I used to be able to do around the house, now my girlfriend has to do. That is causing A LOT of stress on our relationship. I WISH I NEVER HAD THE "trial". What was that FOR? Just to build me up then have all my hopes crushed?? This has been one of the worst experiences I have EVER had. I know I need to see the NEVRO rep and that "pain management" specialist again. I just can not bear to hear what they both have to say now. I would probably just tell them I want the SCS removed, but I really do not want to have to go through another surgery and all that healing time. I am in pain every day. All day. The meds help somewhat but they do not end the pain. The only relief I get is when I lay down or go to sleep. What a life.......
Kleslie sam4everinPAIN
Posted
Wow this is unbelievable as this is almost word for word what I have/am going through. feel like life is being sucked right out of me. I’ve been told to be patient as there’s hundreds of programs they can use on the device. However getting a Nero rep to call you back can be a pain in the ass. I even jokingly asked my doctor the other day if they would just put the test trial back in. i’m getting changed to program 4 today so we’ll see how it goes because I really want my life back. i’m tired all the time from pain medication and tired of not being able to do simple household chores and I’m tired of being in pain.
meghan007 sam4everinPAIN
Posted
hi,
my doctor mentioned to me that occasionally this can happen. He said for all of his patients it has happened to he has switched out the nevro battery for a different device (leaving in the leads so its a simpler surgery) and that fixes it. can you ask about that?
good luck,
meghan