Anyone had Spinal stimulator removed? Replaced?

Thank you. I'm sorry to hear the DRG didn't help. My pain (burning feeling) is in my toes. I had two surgeries in the toes and that has apparently damaged the nerves and created scar tissue. I spoke with two people who had foot problems and they got a lot of relief with the DRG. One was a nurse and the other an elderly 79 yo gentleman. They both recommended it. Even though the trials cause a lot of back pain I might try the trial.

I'm considering an DRG.I have spoken to this doctor's 3 prior patients. They all did well. Two had a foot problem and one a leg problem. They all got significant relief. They all recommended the DRG by this doctor. I think a lot has to do with the skill of the surgeon. Where was your son's pain?

Hello. I have a severe saphenous nerve neuralgia on the medial side of my knee . It was a result of a neuroma formation at the scope portal for an ACL repair 10 years ago. I am one of those unfortunate people who have never had lasting relief from any therapy I’ve had. Unfortunately, I am about as low as you can go in terms of ongoing pain and lack of functionality. I am hoping to try peripheral nerve stimulation when Covid it is over as I am in Canada and do not have access to the US right now. I have had multiple surgeries and five different attempts at spinal cord stimulation.
I will say that I did get significant relief from the Abbot axiom DRG stimulator back in 2015. It initially decreased my pain enough (;70%) for me to really start making progress… And I did. Unfortunately, for reasons unknown it just slowly stopped giving relief starting at about seven months. By nine months I was right back to where I had been previously.
So it was a wonderful seven months of hope and showed that something could work. Cruel that it wore off and multiple re trial attempts afterwards were not successful. It looks very likely that I developed neuroplasticity with new nerve pathways mediating my pain e.g. my sacral nerve plexus started taking over below my level and the lumbar level just above where my stimulator had been.
So what does all this mean? For starters, my experience is extremely rare and most people do eventually find something that helps, as most clinical studies report some type of benefit to these types of therapies in the range of 70% of participants. The good news is that it really did help and there’s no reason to say it shouldn’t of gone on helping. So for that reason I think it’s worth having to go, as the surgery is not particularly invasive and the technology is getting so much better. The problem is ,however , that they are very unpredictable in terms of how long they give relief. I haven’t seen the recent studies but when I looked a few years ago there was a significant drop off in any study that would look at five years. A lot of studies only went out to six months to a year so of course the results look good. So one thing I would do before having one of these is to get some good information about how long they seem to last and for what kind of condition. I know that DRG stimulation is supposed to be better for single nervous issues in the lower limb and that was certainly true in my experience. So I wish you the best of luck.
Alan

I SO UNDERSTAND!! I had my trail SMS put in and it was AMAZING. RELIEF.. BUT THEN…..
came the permanent SMS placement and the unbearable pain just as you described began. It gets better, Just days after placement I had pain so bad in my neck I could barely move it, but I wasn’t being treated for neck pain. JUST LIKE YOU we could never get the correct setting. Then the kicker, I received an electric shock twice within about a week. My doctor, the SMS rep, and SMS company were all notified about what happened back in November of 2022.
I was told my device was defective and needed to be replaced by my doctor after testing was completed.
It is March of 2023 and I still have the device in me.
It has been turned off since November of 2022 and like you said my pain is worse then before before the device was permanently
placed and now I pain in I never did before, which I have informed my doctor of.
So I am hoping we both find help soon.

My first spinal cord stimulator was implanted in 2014 or 2015. My non-rechargeable battery was approaching the need for replacement about the same time that the leads fractured. I had a completely new rechargeable system implanted in 2017 and have had no issues with the device since that time. Surgery for removal and replacement of the first system was not much different than the initial implantation.

Hello well here is my story i went to get pain stimulator put in and we'll I walked in the room surgery room and did not walk out. They sent me home not able to stand or walk . Went into hospital .from my driveway I had sever pain worst I had ever had and nuropathy from waist down. Was there in hospital I did not sleep for 4 hole days and nights. I finally could for 2 hours at a time . I ended up after 7 days there only being able to stand for about 30 sec to taking about 4 to 5 steps then having to sit cause legs giving out . Then I went yo short term Rehab hospital. They found infections in my back . 3 differant strands top infections doctor was called in he said pain stimulator had to come out . So he called pain dr he did not wabt to take it out so they had words in hallway out side my room. He told him to clear his schedule it was at 8 am next morning . He said if it dont come out she will die . The infections are killing her. He said he had given me the strongest antibiotics out there to treat infections they was not working much . The nurses and doctors was very worried that i might die from it. They could not understand why this was happening any of it for it was new for them. I agree I really felt bad and could not eat or sleep well I would only get like 2 hours at a time for the pain was awful plus was sick from all meds they was pumping in me. I had it remoced next day like he set it for . I then 7 days later left there and went into long term Rehab . Was there where I learned to walk with walker and if long way to use wheelchair to go anywhere for I was told to not walk out side my home . So I went from walking to not walking with out the use of help. as in the use of a walker wheelchair for the rest of my life. I'm going on 7 yrs now since then still have nuropathy due to this. Down both legs from waist down really . Had to learn how to know when I had to use restroom to do both . Have had many accidents with that . But it did improve about 10 percent on that part . But that's it . I went from a viable walking life to a seditary home life . I was a CNA for 35 years . I miss not working but can't. I can't stand in one spot for longer than 3 min . And can't walk over 25 to 30 feet in home then have to sit down . Has anyone else had this happen . For what doctors and lawyers have said they never have seen this ?? . Could not get a lawyer to take case said they don't know if I will improve or not . Well I never did. So don't know why but I have to live with this . Pain meds and nurve meds was added to my daily routine . Please if anyone has seen this or has had this happen please let me know . Thanks for reading my story.❤️ I also will add to this that I think it was a st Jude pain stimulator that they used . The battery pack is what caused the start of my infections also.

They need to remove it . Don't let them because of there cut back they get on the stimulator to stop them from taking it out for test is what happened with me he wanted me to just turn it off and leave it . I refused and so did my infectious doctor said also . He argued with the infections doctor he did not want ti take it out . I was told by a nurse I knew that he didant want to cause of his kick back from the company that makes the stimulator it is like 30.000 dollars or more for them they get a commission on every one . Make your doctor take it out or get another doctor who will is my suggestion. I wish you the best threw all of it for I litterally know your pain 😔❤️

Calcium and potassium is help for nuropathy and pain in general . Just be sure that his levels on potassium stays in normal range . For don't want to much or to little . You can look up the side effects of it . Good luck and I'm so very sorry that your son is going threw this at such a young age . I'm sure that it is very depressing for him I hope his mental health is good. It's very hard threw any thing that has to do with pain and injuries to our bodies to keep good mental health . Good luck to you and I will put him in my prayers and you also . 🙏😔❤️

I have Lumbar spinal stenosis, and I have posted about whether I should get a SCS. My problem is I am reading many negative reviews on them, in addition there appears to be just a "grocery store" of Spinal cord stimulators out there on the market. So how is a patient supposed to chose which SCS to get?
I have an appointment on 6/30 with the physician to discuss me getting an SCS for my spine pain, but I am not going to proceed if these devices bring on more health problems and additional pain then before I had it placed....

In response to your posting, I have a Boston Scientific SCS following two surgeries resulting in the fusion of my spine from S-1 to T-4. I am 13 weeks post-implant and I am finding that it works for me. I am working with a Pilates instructor and using balls and rollers to loosen the muscles around my spine. It does take work, yet, it seems to be working for me. Hope that helps in your decision.