Anyone had Spinal stimulator removed? Replaced?

Posted by mamabear62 @mamabear62, Jun 23, 2020

I had Stimwave spinal stimulator placed a year ago and nothing but problems and severe pain thinking of having it removed and possibly replaced with nevro hf10 . Looking for info on anyone who has had stimulator leads removed and replaced with another stimulator. I’m so scared of more surgeries and if another stimulator will work . Any info good or bad would be greatly appreciated

@lilypaws

@katec Sorry about your husband. What is wrong with his spine and I'm not familiar with the treatment he's having. I hope something works there's nothing worse than pain. I am post- op a fusion to my back from T-10 to my low back of my spine. It was a 9 hour surgery with some complications. I will pray for him.

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I am wondering how you are doing now. I have a fusion scheduled for January at Mayo T10 – S1. I had a fusion in the 70’s L3-S1. I started having problems with the level above that last spring. It got so bad that I couldn’t walk, stand or lie on my back. The vertebrae above my fusion fractured in 2 places, slipped forward taking the disc with it and leaving very little room for the nerve. The local surgeon said he could stabilize my back but not to expect too much pain wise. So I went to Mayo in August and saw a surgeon who uses new hardware which is supposed to be less invasive to place. He wants to cut apart my old fusion to put the curve back in the lumbar spine (back in the 70’s it was standard to straighten the spine before fusing it) and then add the levels up to T10 because on MRI they were all failing. They plan to do a staged procedure over 2 days. I am 69 now and am worried about how my body will handle this major a procedure, Everything the surgeon said made sense to me and he really spent a lot of time. I wasn’t expecting to need this much done so I’m a little nervous about it.

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@teri64

Thank you so much and yes the nervo team were working with me trying twice with 3 different programs both times and finally when they told me to turn it off . I have heard nothing from them since . The only doctor here that does this procedure saw me and said I looked fine and sent me to physical therapy which I'm still doing and I told him if I decided to have it removed I would not go back to that hospital and he informed me that's the only hospital he practices at. I will travel if need be .I have thought about turning the machine back on because it been off and my pain has still been present. Thank you so much for you help ! Anymore suggestions would greatly be appreciated. My surgery was done in dothan Alabama but I will travel!

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Good for you for sticking to your guns about not returning to a hospital you don’t trust! Something happened to me in a small rural hospital in Texas that left me with severe lower back pain. X-rays later showed that my tailbone was broken off at the sacrum and shoved up into my body. The orthopedist who found it said he had only seen injuries like that in severe auto wrecks, plane crashes or other accidents like falling off a cliff. The assumption is that I must have been dropped while being transferred under anesthesia. Although the tailbone was removed, other pelvic pain has plagued me for 17 years. I couldn’t even sue the hospital because no one there would admit that anything had happened and I didn’t have proof that I didn’t have the injury before entering the hospital (other than the fact that I was walking & physically active with no pain before the minor laparoscopic surgery). If you don’t trust a hospital, trust your gut!

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Good afternoon @texasaviatrix, Welcome to Connect……on behalf of another person with a broken tailbone. I am so sorry to hear of that misfortune. Do you have any idea why the pelvic pain was responsible for the tailbone removal? 17 years is such a long time to cope with and manage chronic pain.

Before we go any further, I just want to let you know that I also suffered a broken tailbone. It apparently happened as a part of or result of pregnancy. I had some surgery to protect my cervix from premature labor. However, I did not become aware of the broken tailbone until much later (7 years or so) when hunting for the cause of back pain. I do not recall any medication except Celebrex and then a laminectomy. I remember that pain and discomfort and the limitations on my life.

Sometimes, we just are better off letting sleeping dogs lie. Finally, I ran into a medical technician/yoga instructor who taught me two simple exercises/poses that kept the pain away until this day. Your account may be totally accurate and the resulting condition needs to be addressed.

What is your best temporary (3-5 hours) solution for pain control? How are you sleeping? Can you meet with a pain specialist before the surgery to give you an idea of your options?

Good luck to you……please check back or just give us a quick update. We wlll be here for you.
Chris

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@sue406

I am wondering how you are doing now. I have a fusion scheduled for January at Mayo T10 – S1. I had a fusion in the 70’s L3-S1. I started having problems with the level above that last spring. It got so bad that I couldn’t walk, stand or lie on my back. The vertebrae above my fusion fractured in 2 places, slipped forward taking the disc with it and leaving very little room for the nerve. The local surgeon said he could stabilize my back but not to expect too much pain wise. So I went to Mayo in August and saw a surgeon who uses new hardware which is supposed to be less invasive to place. He wants to cut apart my old fusion to put the curve back in the lumbar spine (back in the 70’s it was standard to straighten the spine before fusing it) and then add the levels up to T10 because on MRI they were all failing. They plan to do a staged procedure over 2 days. I am 69 now and am worried about how my body will handle this major a procedure, Everything the surgeon said made sense to me and he really spent a lot of time. I wasn’t expecting to need this much done so I’m a little nervous about it.

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Greetings from Connect, @sue406. Did you think we forgot you? Well now I have found you and am both excited about your upcoming surgery in January and also a bit apprehensive. My first lumbar fusion was in the 70’s so I have been down that path.

The new options and technology that is available today is very encouraging. And your team at Mayo will be comprehensive and attentive.

Let’s talk about pain. I would like to get some other folks to find you and chime in. Perhaps someone has recently had the same surgery.

For managing pain, there is a pain center at Mayo. You might want to ask for a pre-surgery interview so that you will know how that part of the Mayo team will be able to assess your potential pain and discuss some options. Let me know what questions you might have now?

May you be free of suffering and the causes of suffering.
Chris

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@artscaping

Good afternoon @texasaviatrix, Welcome to Connect……on behalf of another person with a broken tailbone. I am so sorry to hear of that misfortune. Do you have any idea why the pelvic pain was responsible for the tailbone removal? 17 years is such a long time to cope with and manage chronic pain.

Before we go any further, I just want to let you know that I also suffered a broken tailbone. It apparently happened as a part of or result of pregnancy. I had some surgery to protect my cervix from premature labor. However, I did not become aware of the broken tailbone until much later (7 years or so) when hunting for the cause of back pain. I do not recall any medication except Celebrex and then a laminectomy. I remember that pain and discomfort and the limitations on my life.

Sometimes, we just are better off letting sleeping dogs lie. Finally, I ran into a medical technician/yoga instructor who taught me two simple exercises/poses that kept the pain away until this day. Your account may be totally accurate and the resulting condition needs to be addressed.

What is your best temporary (3-5 hours) solution for pain control? How are you sleeping? Can you meet with a pain specialist before the surgery to give you an idea of your options?

Good luck to you……please check back or just give us a quick update. We wlll be here for you.
Chris

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Hello Chris and thank you fir your reply.

To clarify, I am not currently contemplating any surgery. My tailbone was snapped off at the sacrum and shoved up into my body as a result of a hospital accident. We can only assume that I was dropped while I was unconscious, probably when being transferred from the operating table to a gurney for transport to recovery. I say that, because there was no record of anything bad happening to me and it was my word against theirs. Although I came out of the minor surgery with severe lower back pain, I wasn’t diagnosed until 5 months later.

The pain was so severe, that I was basically bedridden until I found a neurosurgeon who was willing to remove the tail bone. The surgery and recovery was a success, and I thought my troubles were over. It’s a VERY long story, but in a nutshell:
I developed new pain about a week after the surgery. I’ve been told that I have everything from SI joint disfunction to periformis syndrome, a luxated pelvis, and cluneal nerve entrapment.

I’ve had everything from physical therapy to chiropractics, Accupuncture, too many cortisone injections to count, every anti-inflammatory, muscle relaxer and pain med known to man and multiple nerve ablations. I had a morphine pump for 8 years (which malfunctioned 6 years into its life) and then swapped it for a spinal cord stimulator 4 years ago…which had been absolutely useless.

The only short-term relief I get is by taking a combination of morphine and hydrocodone. I can only take it once a day, so I save it for evening, when the pain is at its peak, so that I can get some sleep. That’s the short story. I’ve had 3 pain management docs. When the second one ran out of things to try, he announced that he was taking me off all opioids (my only relief) because I’d “been on them to long”. Now my third doc tells me he is no longer prescribing them because the government is making it too hard to do. I have to find another doctor within two months when my meds run out. This is no way to live.

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@texasaviatrix

Hello Chris and thank you fir your reply.

To clarify, I am not currently contemplating any surgery. My tailbone was snapped off at the sacrum and shoved up into my body as a result of a hospital accident. We can only assume that I was dropped while I was unconscious, probably when being transferred from the operating table to a gurney for transport to recovery. I say that, because there was no record of anything bad happening to me and it was my word against theirs. Although I came out of the minor surgery with severe lower back pain, I wasn’t diagnosed until 5 months later.

The pain was so severe, that I was basically bedridden until I found a neurosurgeon who was willing to remove the tail bone. The surgery and recovery was a success, and I thought my troubles were over. It’s a VERY long story, but in a nutshell:
I developed new pain about a week after the surgery. I’ve been told that I have everything from SI joint disfunction to periformis syndrome, a luxated pelvis, and cluneal nerve entrapment.

I’ve had everything from physical therapy to chiropractics, Accupuncture, too many cortisone injections to count, every anti-inflammatory, muscle relaxer and pain med known to man and multiple nerve ablations. I had a morphine pump for 8 years (which malfunctioned 6 years into its life) and then swapped it for a spinal cord stimulator 4 years ago…which had been absolutely useless.

The only short-term relief I get is by taking a combination of morphine and hydrocodone. I can only take it once a day, so I save it for evening, when the pain is at its peak, so that I can get some sleep. That’s the short story. I’ve had 3 pain management docs. When the second one ran out of things to try, he announced that he was taking me off all opioids (my only relief) because I’d “been on them to long”. Now my third doc tells me he is no longer prescribing them because the government is making it too hard to do. I have to find another doctor within two months when my meds run out. This is no way to live.

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@texasaviatrix So you have 2 months to find a new pain doctor? How can these MD’s live with themselves? Your pain has got to be unbearable! Our wise faithwalker007 has posted some legal information regarding opioids and quality of life that you might be able to use when you see a pain doctor. I am so sorry there is nothing I can do but pray for you and be here if you want to write.

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@katec

@mamabear62 @colleenyoung @jimhd

My son did a trial for 7 days of a DRG stimulator. When you do a trial, they only implant the electrical leads into your spine and the actual device is externally taped to your back. It was a pretty minor surgery to implant the leads and my son was able to go home that same day. Had the stimulator provided some pain relief for him, they would have done another minor surgery to insert a small device just under the skin and it would be controlled by a phone. Since the DRG didn’t work for him, he just had an office appt to have the “leads pulled”. He said it was uncomfortable but not overly painful to have the electrical leads removed. I think the worst part was how irritated his skin was from all the tape/bandages that were there to keep the leads and device in place. If you do a trial, you will have a representative from the drug company who will do the “adjustments” for you and make sure everything is working properly. Ours was wonderful and was devastated when it didn’t provide any pain relief for my son. Our experience was with the trial for a stimulator and not a permanent one, so I’m not sure how similar/different the two would be from each other. Hope this helps!

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Thanks mamabear62, could you share with us where you son's pain is located? Mine is in the toes of my foot from 2 prior surgeries. I had the Medtronic traditional SCS implanted last year it only gave me slight relief and I had a little back pain, so I had it removed on August 2nd. I'm told by my new doctor that the DRG which is made by Abbott is much better for targeting pain the the feet. I'm considering the trial for that. The trial I had from Medtronic was only for 5 days but because of all the tape, it was very painful. I guess the trial for DRG will be painful where the leads all placed and taped in.

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@martyk

Thanks mamabear62, could you share with us where you son's pain is located? Mine is in the toes of my foot from 2 prior surgeries. I had the Medtronic traditional SCS implanted last year it only gave me slight relief and I had a little back pain, so I had it removed on August 2nd. I'm told by my new doctor that the DRG which is made by Abbott is much better for targeting pain the the feet. I'm considering the trial for that. The trial I had from Medtronic was only for 5 days but because of all the tape, it was very painful. I guess the trial for DRG will be painful where the leads all placed and taped in.

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My son’s pain is on the bottoms of both feet excluding his toes. His pain dr that did the DRG trial said that these stimulators seem to have a better track record with CRPS ( chronic regional pain syndrome) and wasn’t too hopeful that it was going to help my son’s pain. He was right, after having the trial DRG for 5 days he didn’t see any pain relief no matter how much they tinkered with the settings. And yes, there was a LOT of tape which was irritating to his skin and hard to deal with but was told if he was to get a permanent one that wouldn’t be an issue. Hope this helps!’ Such a terrible condition to have

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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.

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@katec

@mamabear62 @colleenyoung @jimhd

My son did a trial for 7 days of a DRG stimulator. When you do a trial, they only implant the electrical leads into your spine and the actual device is externally taped to your back. It was a pretty minor surgery to implant the leads and my son was able to go home that same day. Had the stimulator provided some pain relief for him, they would have done another minor surgery to insert a small device just under the skin and it would be controlled by a phone. Since the DRG didn’t work for him, he just had an office appt to have the “leads pulled”. He said it was uncomfortable but not overly painful to have the electrical leads removed. I think the worst part was how irritated his skin was from all the tape/bandages that were there to keep the leads and device in place. If you do a trial, you will have a representative from the drug company who will do the “adjustments” for you and make sure everything is working properly. Ours was wonderful and was devastated when it didn’t provide any pain relief for my son. Our experience was with the trial for a stimulator and not a permanent one, so I’m not sure how similar/different the two would be from each other. Hope this helps!

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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?

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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

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