The Main Complaint About Spinal Cord Stimulators
Posted , 24 users are following.
I've had a Nevro spinal cord stimulator in me permanently since June 2018. I did a trial version of it for ten days about 3 months prior to the permanent implantation. I have what is called the "paddle" version of the stimulator, which means the leads that go up my spine are connected at the top to a paddle that looks somewhat like a flattened end of a spoon. And of course at the other end the two leads are connected to my battery. The battery is implanted in my right butt cheek.
I've been reading this message board since shortly after I got my stimulator implanted permanently. While there haven't been a large number of comments about spinal cord stimulators on here (maybe a dozen or so), but I've noticed a distinct pattern in all of the comments about these stimulators. Virtually everyone who complains about their stimulator is not technically complaining about the stimulator itself, their complaints seem more centered on the implantation itself. That seems to be the main complaint - that some aspect of how the doctor placed it inside their body was somehow wrong, or was done in a way that left them vulnerable to feeling pain, or to having the stimulator shift, or the leads detach, or some other malady related to implantation. I don't think I've read almost any comments about the functionality of the stimulator itself, meaning whether or not it actually relieves their pain. Everyone seems focused on some aspect as to how it was placed in their body.
That's not to diminish their sense of pain or discomfort, but those comments are not about how well the stimulator itself works as designed, it is about the unique pain of potentially bad implantation. Hasn't anyone had a successful implantation, who can then answer whether the device did the job as it was intended or not?
For those people whose primary complaint was about implantation, I would ask two questions: first, what part of your body was the device placed in? Mine was placed in my buttocks and has caused no problems. Seems like everyone else had theirs put in their ribcage, which seems to be related to their implantation pain. And the second question would be: what type of medical professional implanted it? Was it a full-time surgeon, or was it your pain management specialist? Mine was done by an actual back surgeon, mainly because the implantation of the "paddle" type of stimulator requires it (they have to break open the vertebrae to place the paddle). Most pain management doctors, however, may not be trained surgeons, and that could be a factor in why folks complain of implantation problems.
I'd be interested to hear the answers to these two questions from those who have had stimulators implanted, especially those who have had implantation complaints. It could be helpful to those who are thinking about getting a stimulator (i.e. ask whether you can have an actual surgeon put in the device, and ask where it will be placed).
0 likes, 29 replies
Concha Seafarer123
Posted
I had a spinal cord stimulator put in 2 years ago, never worked for the get go. Battery stopped working about 6 months in and could never get it to charge. The Medtronic rep had the jump start it and it didi start but would not hold a charge, due to the fact that the device is to stay upright and mine is sideways. I am still fighting to get it removed, and it is beginning to be so painful. I just don't know where to turn next. Any advice would be so very helpful.
Thank,
Beth
Concha Seafarer123
Edited
I had a spinal cord stimulator put in 2 years ago, never worked for the get go. Battery stopped working about 6 months in and could never get it to charge. The Medtronic rep had the jump start it and it didi start but would not hold a charge, due to the fact that the device is to stay upright and mine is sideways. I am still fighting to get it removed, and it is beginning to be so painful. I just don't know where to turn next. Any advice would be so very helpful.
Thank,
Beth
Seafarer123 Concha
Edited
Beth,
So very sorry to hear that. The batteries should be good for at least 5 or 7 years, at which point it is pretty common that the doctor goes in to replace it. I don't see why, if the battery has demonstrably stopped working, that they won't just swap out for a unit with a working battery.
Two questions though:
(1) Who exactly is saying no to you regarding a removal/replacement? Is Medtronic refusing to give you a replacement stimulator? Is the doctor who implanted it refusing to do the replacement/removal? Is an insurance company (or NHS if you are British) refusing to cover the cost of the replacement/removal? To get the situation resolved you would first and most importantly want to know who actually is the roadblock.
(2) Second question, a little unrelated. You say that the pain from the stimulator is getting really bad. Generally speaking, stimulators shouldn't cause any problems when they are essentially turned off. Where is your stimulator implanted? Are you sure the pain you are feeling is from the stimulator?
*
But aside from that, I would say once you find out who exactly is refusing to help you (and what their reasoning is), the best way to get action (particularly if you are in the US) is to go speak with a personal injury lawyer. A botched procedure like yours is something they would find very attractive as a case. They might at least be able to rattle cages with a threatening letter, to at least get the doctor to remove the device. Best case scenario, they could get you some money for your pain and suffering. Also, it is very likely that Medtronics has made payments to your doctor for his support of their product. You can find those payments on openpaymentsdata.cms.gov, simply by typing in your doctor's name. If you do find such payments, that would make the case even more appealing to an attorney.
Good luck!
shaun64023 Concha
Edited
Hi Beth,
I'm curious if you ever had a replacement? My father is going through the same thing as far as getting it out or replaced. Boston Scientific says call your surgeon and the surgeon says call Boston Scientific.
It has been reset and reprogrammed numerous times because it won't charge right the last 2-3 years by Boston Scientific So that tells me they aren't the problem. The doctor, Mayfield Clinic in Cincinnati OH won't even make an appt for my dad.
Unfortunately he has a severe case where it's caused a lot of damage to his body and his mental state. He is miserable all the time. Sometimes he can't even open his eyes due to the pain from nerve damage caused by the stimulator. The stimulator, being old, should have been replaced a couple years ago WITHOUT these problems.
Fast forward till today, NOW HE HAS CANCER and the oncologist can't/ won't do kemo or anything untill it's out. He said the device is too weak and will leak battery acid. He's spoke to the main attorney but he is in California so that's hard.
ANY SUGGESTIONS
mary7955 Seafarer123
Posted
My Spinal Cord Stimulator has been in my body since 2018. It was implanted in my right upper butt cheek. Now it is just under my right kidney. I had told the surgeon not to put it on that side because I have a "Dumbbell" tumor on top of my sciatic nerve. My stimulator was sitting on top of the tumor for quite some time. Now it has migrated north just above the tumor. I am concerned about my kidney since I have Stage 3 Kidney Disease due to Lupus.
Should I contact another surgeon since I am no longer in the same state? What should I do? I am 65 years old and very concerned about my health.
valerie40480 Seafarer123
Edited
There are numerous articles, investigations & other doctors & clinics that have documented the problems, injuries & worse of spinal stimulators. There are also recalls & class action lawsuits on spinal stimulators & it's got nothing to do with the placement of the devices. My pain specialist has told me, in no uncertain terms, that I either get a spinal stimulator or he stops my opioids. I am not a good candidate for a stimulator because of all the conditions I have as well as the depression & anxiety I have. I've done all the injections that are available & nothing has worked except for opioids & they only do so much. I refuse to get a stimulator & I'm sure that I'll be looking for a new pain specialist but they are few & far between for me because I am on high doses because of all my problems & because I have been suffering them for over 20 years. I no longer am comfortable with anyone trying to implant anything in me that's not my original equipment because of the failure of the cervical fusion done in 1999. If I could, I wouldn't see another doctor for anything because they do not know enough about the spinal cord to be doing anything with it. If a stimulator works for you, congratulations! but it doesn't work for everyone & it causes too many injuries to people to be considered for a worthwhile alternative to opioids.
linda42934 Seafarer123
Posted
i have had mine only a few months and ive had problems with mine from the get go. i am a heavy woman and i have to twist like a pretzel to even get it to work , and the thing aint did nothing but cause me more pain they have charged the settings 3 time and it still aint right, and the battery dies quick , and when it is charged it feels like its burning my skin, i am finally going to get it out this month . after trying to get them to take it out 3 times and they didnt want to , till now
anthony73546 Seafarer123
Posted
Hi folks,
I've had the Nevro Spine Stimulator since Feb-2018. It is paddle installation mid back with battery in right side abdominal. I've had 7 back surgeries including 2 laminectomies, a charite artificial disc (L5/S1), Fusion cage L4 to S1 and then removal of the fusion hardware due to bad installation. Finally in 2018 I had the Spine Stimulator installed.
Prior to my charite disc I was in a wheelchair and that allowed me to walk. Similarly prior to the SCS I was in a wheelchair for about 4 months and it allowed me to walk again so I have to say it was very successful.
Unfortunately according to my doctors my spine is continuing to degrade so we are planning for another return to the "chair" in the next couple of years.
To that point, the SCS (after about 4 years) is no longer providing relief. I believe it's probably time for it to be removed however I now live in a country that the Nevro device is not sold or licensed in (Philippines). I've reached out to my old surgeon as well as Nevro (3 times each) unsuccessfully to find out what should be removed.
Do any of you know?
Thanks so much for any thoughts or experiences you have. Great forum. It is wonderful to see all the information and I wish you all well.
Thanks,
Tony
Seafarer123 anthony73546
Posted
Tony,
Very sorry to hear about your situation. I'll say up front that I'm not a medical professional and I don't know the answer to your question. However, I have the Nevro HF10 model implanted as well, and I had the "paddle installation" too, with the battery in my right butt cheek. I too have had a great deal of success with the pain reduction from the stimulator.
I too have thought about what I would need to do if I ever needed it to be removed. As you know, the paddle installation is far more permanent. In the non-paddle installation it is relatively simple to pull the wires out - indeed I had the wires removed once with only a local anesthesia during the trial version, which implants the wires without the paddle setup.
I think you probably have a couple of options, of increasing levels of difficulty:
(1) You can just turn it off and forget about it. From what I understand, other than the need to replace the battery every 5-7 years, it is designed to stay inside you forever I believe. The only limitation to that is that you have to be careful about having an MRI, although from what I understand now, there are settings by which you can have an MRI even with the HF10 inside you.
(2) You could have an abdominal surgeon remove the battery from your abdomen and leave the wires inside you. The only tricky part for the abdominal surgeon would be unscrewing the wires from the battery leads but I don't think that would be too hard - it's just screws I believe.
(3) You could have a back surgeon remove the paddle and wires, but that would be tricky for several reasons. First, you would probably have to have another surgeon remove the battery first, a back surgeon might not want to mess around disconnecting a device in your abdomen. Second, removing the paddle might also be tricky, I assume the paddle has fused into your spine by now - he would likely have to do an additional laminectomy in your thoracic spine, and I don't know how strong your spine is in that area to do a second laminectomy on the same vertebra (the first laminectomy being the one he had to do to implant the paddle). Perhaps he could leave the paddle and just remove the wires? Finding a back surgeon willing to do all this for you might be tricky but remember, there are surgeons that have to remove bullets from spines in trauma wards, I would imagine there is some surgeon that can do it.
But the question I would ask is - are you sure the stimulator gives no relief at all? From time to time I think my stimulator isn't working as well as I would like but then I turn it off completely for 2-3 days and I am sharply reminded that, even if I feel pain with the stimulator on, I feel MUCH more pain with it off.
But if you are convinced that the stimulator provides zero pain mitigation altogether, then if it were me, I would just turn it off and forget about it. Avoid the daily hassle of recharging it. At most I might consider getting the battery removed, because if any part of it is risky having it inside you, it is probably having a dead battery stay in there. But for me, I wouldn't even be that worried about leaving the battery in me.
Hasn't the Nevro tech support line been helpful in discussing this? Have you asked them about long-term impact of leaving it in without battery replacement?
Good luck. Bob
anthony73546 Seafarer123
Posted
Hi Bob,
Thanks so very much for your responses. I like thought process and approach. I have turned it off for a few days with no perceived difference. I haven't yet called Nevro but have sent 4 e-mails to their support desk. After the first a person got back with me to say they question didn't come through on their system so I e-mailed them directly only to never hear another response. I'll try to give them a call.
Thanks again for hosting this thread. Great info. I really appreciate it! Tony
Piglets70 Seafarer123
Edited
Hello! Ive been reading all the replies to your post about stimulators and i am in awe! I have 2 stimulators in actually. My first was done about 3 years ago for my lower back and the leads were placed mid back going down and battery was inserted in hip area. I had done a 7 day trial prior to getting the permanent one done and knew I felt results. I had done several injections and been on pain medication and muscle relaxers for years and nothing was helping and felt my life was only getting worse and i was losing what meant the most to me and that was my family so after finally meeting this "new" pain management young doctor who just started with the practice and believe you me when they told me I had to meet with him one day I was livid! I was very comfortable with the one I had been seeing and he didn't have any availability and scheduling messed up my appt. so here I went with a young "new" doctor fresh out of school! Well, not only is he a pain management doctor but he is also an anestheologist, and he is also a huge advocate for teen girls in sexual human trafficking! Most importantly, he is one of my special people in my life and i care and love him so much! Not many doctors can you say that about right? ok, we do the first one and a I'm doing better after a few adjustments with the company adjusting my ipod then my sciatic in my left leg starts bothering me more and more but i say nothing.
I have a 4 fusion neck surgery Ive got to take care of first with my neurosurgeon (who by the way is also my very special hero that i care and love as well) and I know eventually this pain will just go away. Ill try to play around with my ipod maybe its my back thats causing this. I have my neck surgery..,long long recovery...then im told after 26 years of marriage i have become a "burden" more now than anything so its just not going to work and he wants out of the marriage and 29 year relationship we have shared with 3 children....him convincing me to be completely dependent on him with no education because staying home to raise our children was what I needed to do and scrub the house and do the yard and be the coach on our daughters softball teams were more important and I wouldnt change any of that again..then the dr told me...you are as bad as you are with your back, neck, leg, all of it..because you my dear have worn your body out! WHAT! I am only in my mid 40's! So with all that, I move out of the house, I go back to my pain dr and in tears and pain so he asks me if i want to do a trial for my sciatic and at this point I would do anything because i was ready to cut my leg off. The pain was too much and I began to fall back into that depression I had been in before. So we go for it and after a few adjustments I feel like a new woman! My girls were grown by this time and now I have 1 precious granddaughter and 2 more grandchildren on the way by my oldest daughter and youngest daughter and they are only 2months apart! im getting another girl and a boy! Cinco De Mayo baby and 4th of July baby! So this Gigi knows she's got to feel better! Trial went good then the per came along and rocked my world! My doc accidentally hit my spinal tap and i was leaking fluid and the headache i had while it was healing for 72 hrs was horrific!!! He felt terrible!! Im now right at 2 years since having this one implanted and leads start at bottom of my other leads and go down my left leg...complex situation a bit lol...battery is in other hip and im connected to only 1 ipod. i know I have a story to tell...about a year and a half ago my back started hurting tried adjusting and nothing so Ive given up with that...and probably 5 months after that my leg started overstimulating here and there out of the blue...i changed my ipod and nothing and it came little more frequent but so did the pain again. Long story short.....I am right where I was in the beginning...but i now have no insurance to get these taken out...i have no pain medication for the pain because going to the pain dr is too expensive...I can not sit stand or lay down for too long at each position or limbs go numb...and i dont get to play with my grandkids like i want to do and thought I would be able to do once i put these foreign objects in my body either! I love my dr yes...I should have never listened to the company and I should have gone with my gut! Theres just not enough research done to know well there wasnt back then to know how well and safe and all the side effects these different stimulators can have on an individual. Thats my opinion and my own experience! I hope anyone else that goes with this has a much better success story! I truly truly thought I was going too! Thank you for posting and sharing!! Have a great day!
karen42575 Seafarer123
Posted
I have the latest model of Boston Scientific’s SCS. I had it implanted three months ago by a neurosurgeon. Despite having had a successful trial, the actual implant has been a complete failure. It has not helped me at all. One concern I’ve had is that I never feel the stimulation in the areas where my back hurts. The BS liaison has adjusted the programming multiple times, and she tells me that it’s normal to feel it more strongly in my thighs and feet, but this seems strange to me. Ultimately I think the problem is that my pain is not nerve pain. I feel that the pain doctor was grossly incompetent in suggesting the stimulator. I have two sources of pain - one is from the hardware from a previous fusion. The other is what I have self-diagnosed as sacroiliac joint syndrome. What’s strange is that I have a TENS machine and it works extremely well for my pain. Unfortunately I cannot put a pad over the battery, which is one reason I would like to have my SCS removed. I’m wondering whether it’s possible to remove only the battery and leave the leads in place, as I know the paddle removal is very involved. I’ve scoured the web and I’ve been unable to find anything about this possibility. I think the surgery would be tremendously simpler to remove just the battery. I would love to hear from anyone who had the battery explanted and left the leads in place. I plan to discuss this with my neurosurgeon at my next follow-up appointment.
maggie10530 Seafarer123
Posted
while i just discovered this website and it has been several years since the person posted, it is now Jan 2024. in October 2023, I had the trial SCS surgery. i had extreme procedural pain that lasted several days. once that subsided, i was able to adjust the remote that came with my unit to a comfortable level of stimulation. About four days after the procedure my doctor took xrays and it was discovered the leads had slipped down about 1/2 inch. not a big deal but i was warned to he careful. no bending, lifting, twisting, reaching over my head etc.,
Day five I was beginning to feel pain relief and was actually able to get onto a treadmill and walk 1/8 of a mile. that was a huge win for me since i hadn't been able to walk 20 feet without screaming out in pain. When i reached day seven of the trial it was time to remove the leads and end the trial. i begged for them to leave the stimulator in but they could not. Unfortunately the medical assistant who was supposed to remove "all" my stitches did not and left some in the open area where the leads had been placed. it took a month and a half of surgical cancellations because I had an open wound that wasn't closing. finally one night I reached behind my back while i was showering and pulled out a clump of stitches that had not been removed properly. after that, the hole finally closed.
Two weeks ago in January of 2024 I underwent surgery to implant the Spinal Cord Stimulator under the skin. the surgical/procedural pain was grueling but subsided after about a week and a half with tenderness around the incision site. at week two I went in to have the staples removed from both incision sites in my back and they took xrays. It was discovered the leads had slipped down over three inches or in medical terms the leads had migrated. i was never told this was a potential complication. I had done everything right and followed all instructions. i was devastated. they activated my unit at that time and so far I am not receiving any relief. i have now been referred to see a Neurosurgeon who will have to re-do the entire procedure. I am sick about this. There is no way foe me to even know if the first surgeon did anything wrong or if I did something wrong. If I want the chance to feel like I did during my trial then I have to go through this all over again. They say the third time is the charm but I'm not holding my breath. I'm told I have to wait two-three months foe the revision surgery so this surgery can heal. I have the referral to see the next surgeon and I'm waiting to get an appointment. i will try to update my status then.
Seafarer123 maggie10530
Posted
Maggie,
Sorry to hear you have had so much discomfort from your procedure, and also that the wires have migrated. Two comments that might help:
First, migration is generally not a big deal (although I don't think I've ever heard of the wires migrating three inches. That seems like a lot). In most cases of migration a new surgery is not required. Typically a technician from the stimulator company can come to the doctor's office and reprogram your device so that the wires now send out a signal in the right area. This can be done by placing you under a fluoroscope, seeing where the wires now line up to your spinal cord, and adding new programs electronically to your remote control that will adjust for the migration. Although perhaps your wires have migrated so far that they are beyond the usable area of your spine that can be electrified for pain relief.
Second, there is a way that your wires can be implanted in your spinal canal such that they will never migrate. This requires a more serious surgery, though, so you should think about it carefully. They insert something called a "paddle" in one of your thoracic (mid-back) vertebra and they permanently attach the top of the wires to it. The "paddle" is just a small piece of metal, like a small coin, that fits into your vertebra permanently and once the wires are attached to it, they don't slip down. I have a paddle and in six years my wires have never migrated even a tiny bit.
However, you should be careful in choosing this option. For one thing, it is a bigger surgery - it is actually a spine surgery, similar to what you might get if you needed to have a spinal disc repaired. And for another thing, it will be much harder if you ever want to have the stimulator removed. It will require having another spinal surgery to remove the "paddle." It's not impossible but it is a bigger deal than your current situation, where they can just make a small incision and slip your wires out completely.
Talk to your surgeon about the paddle approach. And also talk to the stimulator company about whether you can be (painlessly) reprogrammed for pain relief even though there has been some migration. Good luck!