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
Alayna Seafarer123
Posted
My device consists of a paddle and battery. The paddle was inserted mid back just as yours was. The battery is located on my lower hip. Each surgery was performed by a neurosurgeon, not my pain management doctor.
Seafarer123 Alayna
Posted
And how has the stimulator been for you, in terms of effectiveness of pain relief?
Alayna Seafarer123
Posted
It has worked wonderfully except for this episode. My pain dropped at least 70%.
tamra73559 Seafarer123
Posted
mine is implanted above my right butt cheek, and i have the leads that are anchored mid back. i had it implanted june of 2015, and my pain management dr put it in. my trial was only 3 days because the programming device malfunctioned, but my dr determined that i had a successful trial and went ahead with the implant.
i had significant pain relief for the first year, but then it started dropping down till i was no longer getting any pain relief. i believe it is now malfunctioning. when i try to charge it...i have the paddle that you place over the battery...it tells me that it cannot locate the ipg to charge it. i havent even turned it in for a few months, and thought i could just leave it in, and not use it, as i do not want to go thru another surgery, nor do i want a replacement put in. right now, along with the pain, i have constant vibrating/buzzing that goes from my lower back, down both legs. my pcp dr did an xray, and everything is still in place, so now i am going to have to have it removed.
one thing i have noticed from a lot of people commenting here, and other support groups i'm in, is that a lot if people had the trial with the leads, then when it came time for the implant to go in, they are putting the paddle in, without telling patients before hand, that that is what was being done. it seems more people have problems with the paddle than the leads.
don't know if that answers your questions, but that is my experience. i do know, that if i would have done more research before hand, i would not have had it done.
susan13766 tamra73559
Posted
I also unknowingly had the paddle put in and was under the impression that it was going to be the same as the trial was. The only difference was to be that the battery would be inside instead of out side. My pain mgmt doctor referred me to the neurosurgeon that worked with him so instead of going back to Manhattan as I did for two previous spine surgeries I went with her. Had I known this was going to be much more invasive I would have gone to Manhattan.
I was not told anything else when I went for my consultation. I often wonder if the doctor mentioned it to me in pre-op because she came out and had me sign a lot of paperwork after hours of waiting for the surgery. But I know for sure nothing was said about a laminectomy and I don't remember hearing the word paddle. Having said that... the paddle causes me pain all the time and it keeps me from doing the simplest tasks for example washing dishes or drying my hair.
It always hurts whether I'm sitting or standing, lying down gives some relief. All in all I am better off then before the SCS implant but I still have chronic pain but not as severe as before.
steven88698 tamra73559
Posted
Dear Tamra,
I read your message and was completely blown away! why? well, I had three scs operations including the trial. The crazy thing that I'm left with, after having all the metal removed, twice, are vibrations from inside my body, from my chest down through my abdomen and into my toes, exactly every other day, lasting 24 hours. I've searched for someone having this cut years and I just read your experience.
i had the trial and it helped the L5-S1 nerve pain, however, it was simulating a nerve in my right hip that was very painful. so, the doctor said that because I had relief of pain in the L5-S1 area, he's remove it sooner than a week and that I was a good candidate for s permanent SCS.
The doctor informed me of everything and I went ahead with the next two lead operation.
he placed the battery in my left upper buttocks. When I recovered and a week went by, I had terrible pain on my left pelvic bone.
For the next six months they kept reprogramming the SCS. I had a Boston Scientific SCS implanted. They finally believed me that the pain was terrible and removed the SCS. Then, They called in a neurosurgeon to implant a paddle lead.
Again, after a week or so, I felt terrible pain, but now on my left pelvic bone side.
After another six months and ten reprogrammings, and, vibrations throughout my body even while the battery was dead, they removed the SCS. That was July of 2022.. Since then, none of the doctors will do anything for more pain that they left me with, all down my spine and across my lower back.
Sorry to be so long, I just wanted to know if you've had any help with the vibrations?
Take care, and good luck! SC
tamra73559 steven88698
Posted
Hi Steven,
Sorry to hear you are going thru this too. To answer your question, no, they never did find anything to help with the "vibrations." I did have my SCS removed in Nov of 2019. Removing it did not help at all, the damage is permanent so far. I did have a pharmacist that is in one of the fb pain groups tell me that the SCS may have been in long enough that the nerve path may have become reconditioned to the stimulus from the SCS and has failed to revert to it's normal state. When I get that bad vibrating, nothing seems to help, not even the opioids I take for pain, and it drives me crazy sometimes. When i touch my abdomen on my left side, I get vibrating all the way down to my toes. If you're on fb, there is several failed spinal cord stimulator groups that may have useful information for you, if you want to join. Take care.
Tamra
Seafarer123
Posted
Thanks for that detailed reply. In terms of the problems with the paddle version, my doctor was pretty clear with me in advance that a paddle was going in - he said they tended to recommend the use of a paddle for folks who are likely to be active after the surgery, and who could deal better with the surgery itself (since implantation of the paddle is a more rigorous operation than the alternative, the so-called "percutaneous" method where they just implant the leads but no paddle). Indeed I'm surprised folks wouldn't be aware they were getting the paddle version, it's a much different surgery (implanting the paddle is an actual back surgery requiring general anesthesia and a laminectomy of the spine).
What is your view on why the paddle version causes more problems? I was told that - aside from having to undergo a more aggressive surgery - that the paddle version would lead to fewer problems once it was operational. Since the leads are anchored to the paddle in your thoracic section of the spine, there is no possibility of downward migration as there is with the percutaneous version of the implantation. And it is the potential for downward migration of the leads, typically through simple gravity, that throws off the stimulator because it changes the spinal location of where the stimulator is stimulating.
The only downside I could see from the paddle version is that it might cause pulling at the other end (being so secure at the thoracic end) that it might lead to the wires pulling away from the battery pack. Although no doctor or medical professional said that to me, that's just my conjecture. What have you heard as being the cause of more problems with the paddle version?
tamra73559 Seafarer123
Posted
i guess i cant really give you an honest view of the problems with the paddle, as i dont have that one. the main thing i was hearing from others is that the wires were breaking off, and the fact that many were unaware that that was the one that was being implanted. i dont know how /why a dr would chose to put the paddle in without the patient being aware of it, and without their consent. i would think with your description of paddle insertion being an actual back surgery, by law, they would be required to inform the patient of this, as it would entail a longer recovery period.
You are quite lucky if your dr is willing to bring you back up to the dosage of pain meds you were on previously (i think you stated it in one of your comments to another)
i also dont know what previous surgeries you had before you decided to go with a SCS. i have kind of a unique and different situation. i had a disc replacement with a titanium cage above at L4-5 S1 in 2006, which was not successful. But, the dr that performed my surgery lost his medical license. he was involved in a scheme where they were putting in fake screws that were made in a job shop in California, and taking kickbacks from them. The name of the company is Spinal Solutions, and was also featured on an edition of Crime Watch Daily with Chris Hanson. if you google it, you will find the story. what is happening, because they are not hospital grade titanium screws, they are breaking in half in people. the only way you know if you have these screws in, is to get your records from the hospital and see what is listed as being used in your surgery, or, if they open you up to see for sure, which they are not recommending. not everyone was able to obtain their records, as the hospital is also involved in a lawsuit, and i heard the dr took some patients records with him when they shut down his practice. i was not able to get mine, so i dont know if ive got a ticking time bomb in me or not. i guess this is some of my hesitation in not wanting to have another surgery, and having my SCS taken out, but i dont think i have a choice.
Laura3333 Seafarer123
Edited
I am waiting for an scs with leads trial, I also am interested in other peoples experiences. Seafarer123, how has it helped with your pain? Have you had good relief and would you have it done, if you knew what you know now.
Seafarer123 Laura3333
Edited
Hi Laura,
Bottom line is, I would have it done again, but I do wish someone had told me more about what to expect from the experience. I've experienced anywhere from 20% pain relief to 90% pain relief, depending on certain things I'll discuss below.
While I am satisfied overall with the stimulator and would do it again, there are three things I wish I had understood better about the stimulator experience:
(1) Understand that once the stimulator is implanted, Nevro (and to a certain extent your doctor) have made their money off of you. Nevro in particular has no further possibility of making money off of you after implantation - and the service shows. Yes they will help you because they don't want people going around saying their stimulators fail, but the service level is vastly diminished. For example, my Nevro tech was answering my texts about 2-3 times a day during my trial period; after it was implanted, the tech was much harder to get in touch with, and seemed annoyed to have to deal with me. I assume they are paid on commission, and hence time spent with patients after implantation doesn't put money in his pocket, and it showed. He does his job, but his level of helpfulness and support is vastly diminished. Just be aware of that.
(2) My relief level of 90% which occurred immediately was at my then-existing medication level. The goal, of course, is to not only reduce your pain but to also get you down (or off of) the pain meds. For the last year we have tried to lower my pain meds but there are SO MANY settings they can program into the Nevro, and they really don't seem to know which ones to try, so it is trial and error. And some of them don't work, so that when you lower your pain meds and they try to adjust for it, you can spend a lot of time in pain during that experimentation period. I'm about ready to give up, after a year, and just say "let's go back to my original pain med dosage, at least the stimulator, coupled with that pain med level, left me virtually pain free."
(3) Finally the MOST IMPORTANT thing I wish I knew - and they DON'T seem to tell you about this - is something they call "over-stimulation." I call it "phantom pain," but I'm sure their lawyers don't let them refer to the phenomenon with any term that suggests their product can actually CAUSE pain. What happens in this case is that if you turn up the stimulator sometimes, hoping to get stronger pain relief (more is better, right?), the higher energy level can "over-stimulate" your nerves. What that actually means is that the stimulator can CAUSE PAIN, often in areas of your body that were never causing you pain in the first place. It can also aggravate pain in your usual pain areas (lumbar, sciatica, etc). This over-stimulation pain can actually be quite draining and can, in some cases, be fairly severe. The good news is that it goes away in about 30-60 minutes if you lower the power level on the stimulator. The bad news is that you can't always tell that the pain is due to over-stimulation - you just think "hey, maybe I overdid it today. Maybe I strained a muscle, or slept wrong, or inflamed my usual pain area." It's hard to tell.
*
I know those three items I listed above sound severe, but in reality if you stay on top of it (including staying on top of your Nevro tech), you can control these issues and make the stimulator work for you. But severe pain can be depressing as it is, and I suspect a lot of people, when faced with these hassles of the stimulator (that nobody tells you about in advance), get depressed and want to give up on the stimulator. But it CAN work, you just have to really involve yourself in the process, it doesn't just turn on, relieve your pain and allow you to throw the pain meds in the trash can. It takes a lot of work, and patience, often in the face of frustration and re-occurrence of pain.
Hope that helps.
Laura3333 Seafarer123
Posted
Thankyou so much for your comprehensive reply, it's very useful to know all this. The med part of it doesn't really worry me as I've not found anything that really helps with the pain, been taking gabapentin, but weaning myself off it. Any pain relief would be good, also I heard the nevro reps aren't all that good with communication after implantation.
The escalation of pain, or maybe pain caused in other areas is concerning, thankyou for explaining this, it's something to watch out for.
The waiting list is quite long where I am, it's a few months since I was put forward, and still waiting for assessment, then a few months for the trial.
Wish me luck!
bradley_08701 Seafarer123
Edited
my stimulator implant was first implanted by my pain management doctor. He put in my right side of my buttocks and within a few hours the battery slipped about three inches and pulled the lead wires completely out of the spinal chord. Because of this I had to seek another doctor that knew what he was doing. the first doctor was worthless and should of never pretended he knew what he was doing. He wanted the kick back he received from the manufacturer of NEVRO F10.
My second surgeon did the paddle system which was a great surgery but the Nevro F10 just didn't work. All it did was create more pain....battery stopped working, infection and the battery pack slipped causing pain sitting or lying on the bed. I called the doctor and told him I wanted the piece of crap out of my body. Once he removed it I felt so much better. The surgeon said because the way the pain management doctor was not qualified to do the implant he created scar tissue among other complications.
Seafarer123 bradley_08701
Posted
Ouch - what a horror story. I'm so glad I had a true surgeon do the paddle approach on me. I've had no slippage of the battery pack, no detachment of the leads, no surgical problems whatsoever.
I've had the problem with the unit causing its own form of neurological pain, but as I mentioned elsewhere in this thread, I was able to work around that, mainly by powering it down and having the tech try different settings (one important setting change they can make is the "pulsing" setting - they can change the amount of time the power is on vs. off. That made a big difference for me.
But your issues were big - both an incompetent placement of the device and then the device simply didn't work for you once implanted correctly. Sorry to hear you suffered so much with it...
bradley_08701 Seafarer123
Posted
For me the first implant was done by my pain management doctor. Bad idea...
My second surgery done by a neurosurgeon who did a great job putting in the paddles, but I think if the first doctor hadn't screwed things up how would the Nevro F10 worked.