My spinal cord stimulator was also adjusted multiple times.
Adjustment involved me contacting an ABBOTT rep and describing my symptoms repeatedly after which the rep would tell me which setting to use. I made many calls for assistance in trying to find an effective setting.
Ultimately, I was told to just "keep trying" different settings, never to hear from ABBOTT again.
If it was apparently never going to work for me, I would have appreciated ABBOTT explaining why and what my options were from that point forward, but that didn't happen.
I've read that others have had successful implants, and, there are others, like me, who regret their decision to have the stimulator implanted.
I, too, had the Spinal Cord Stimulator put in. I, too, had zero relief from the pain from which I’ve suffered for 15 years. I’ve had multiple surgeries for scoliosis which did indeed help straighten my spine; however, left me with unrelenting pain. Unfortunately, the SCS did not EVER relieve me from this awful pain. I was very disappointed, to say the least.
So, the moral of my story is I’m still on narcotics after 15 years. Very, very upsetting.
@labgirl, Was your trial successful? My Abbott WaveWriter trial was very successful so I went ahead with the implant 4 weeks ago. I am currently trying to find that sweet program. The pain down my left leg is gone but remains in a small triangle area above my tailbone. It makes sitting for a couple of hours difficult. I had one in person programming at my post op doctor visit and will meet with the doctor & rep again at 6 weeks post. There are 5 different programs on my remote and I am still working through them. The reps have been very helpful and quick, within minutes to a few hours, to reply to my texts or call with questions. They want their product to be as successful as I do.
My trial was brought a small amount of relief, so I was really conflicted about whether or not to go ahead with the implant. I thought that it would be more effective after implantation and my doctor (without coming out and flatly stating it) suggested that this was probably the only solution for meaningful relief.
It would be interesting to see the success rate statistics from the FDA trials that were conducted before the stimulators were approved for widespread use.
The question about whether or not to move ahead with a stimulator implant is so challenging. I empathize with all in this position. Unfortunately, no one can make this decision but the individual.
I, too, had the Spinal Cord Stimulator put in. I, too, had zero relief from the pain from which I’ve suffered for 15 years. I’ve had multiple surgeries for scoliosis which did indeed help straighten my spine; however, left me with unrelenting pain. Unfortunately, the SCS did not EVER relieve me from this awful pain. I was very disappointed, to say the least.
So, the moral of my story is I’m still on narcotics after 15 years. Very, very upsetting.
I'm really sorry to hear this. Did you have to go through a trial to qualify for implant or are you saying the trial gave you zero relief? I'm in the US and a trial is standard. I had over 50% relief with the trial so I recently had the implant. He told me going in that I would probably not get 100% pain relief but my life would improve significantly. Three different neurosurgeons had told me there was nothing they could do surgically that would relieve my L5 nerve pain and SCS might help. I'm at the beginning stage of finding the best program to use. The pain down my left leg is gone but I'm still having pain in the lowest part of my back with sitting for long periods. I've had one programming session with the rep and I understand it takes a few. He is in contact with me every 3-4 days to help with the 5 options he created. I'm so sorry the SCS wasn't for you, dealing with chronic pain is awful.
I'm really sorry to hear this. Did you have to go through a trial to qualify for implant or are you saying the trial gave you zero relief? I'm in the US and a trial is standard. I had over 50% relief with the trial so I recently had the implant. He told me going in that I would probably not get 100% pain relief but my life would improve significantly. Three different neurosurgeons had told me there was nothing they could do surgically that would relieve my L5 nerve pain and SCS might help. I'm at the beginning stage of finding the best program to use. The pain down my left leg is gone but I'm still having pain in the lowest part of my back with sitting for long periods. I've had one programming session with the rep and I understand it takes a few. He is in contact with me every 3-4 days to help with the 5 options he created. I'm so sorry the SCS wasn't for you, dealing with chronic pain is awful.
I am reading about the relief of pain and wishing I could believe it is a solution, I had surgery last year , which was a laminectomy of L,,4,5,6 or 3, 4, 5 can;t remember which as well as baseball size chunks of arthritis. This surgery was the only one I allowed my Neurosurgeon to do, even though I have severe scoliosis and everything else with an S. plus herniated disks etc. My spine has shifted a great deal to the right side as well as protrudes , so my anatomy has changed, Looks pretty bad from the back as well as a large hard bulge next to the lower spine. No one can tell me what it is.. After my surgery I had relief and that bulge no longer hurt, now it is all back and the sciatica in the right leg is a constant unless I am laying down in bed. I am on my feet all day and running all over, I do my treadmill for 2 hours a night but cant walk down the street or in a store without intense pain. Waiting on a new MRI. I write this because the stimulator sounds like the cure for all . My mother had a lot of back issues, she had 2 surgeries that failed, or maybe it was her not doing PT or being active,, she had one of the first St, Judes stimulators put in,, the thing never worked right, a rep had to constantly adjust it.. She had it taken out and my Dad and I begged her not to put another one in.. but they talked her into the new version of St, Judes, so she had that put in about 4 or 5 years ago. I do not think it ever really worked as she was always taking percocet. and no longer walking without the walker, even after 2 knee replacements,, Approx 2 years ago,. I found she had a quarter size hole in her lower back near the spine. after months of wound care, finally one smart DR, looked at it and said the Stimulator was loaded with bacteria and infection and had to come out.. NO ONE wanted to touch her. It was my surgeon last year who said he would remove it. In doing so , the leads were disconnected . they have lead in them. it is a foreign object you are putting in your body,, he firmly believed that the stimulator ate through her back and the hole was so big and open you could see her spine.. It has been a year and a half of hell , I almost lost her at one of the rehabs where she got covid and then Mersa on the incision where the surgery was done. fast forward she had surgery to close the hole that was now the size of a nerf ball from the Mersa . fortunately she had enough loose skin to do this.. She is now healthy and gained all the weight back from being very frail.. too much weight as all she did in this Nursing home was lay in bed, very little PT and in diapers.. She did not go in any of these places in diapers.. She also did not belong on "Memory Lane" with dementia patients.. So I got her out of there and home with my dad,, his expectations of getting back the same wife went all to hell. as she is still now laying in a hospital bed in their bedroom, in diapers with a caretaker, PT , and my dad running all over, he is 87 she is 80 and lazy. I am not a believe on these stimulators and I do not mean to scare anyone who is thinking that this will take away all pains.As much pain as I am in knowing what I know I would never consider it.. You can get the same effects by getting a stimulator belt that you wear and targets the lower back as well as 10s units.. without the surgery and putting in a foreign body in your body that is not meant for these things.. NO ONE will warn you that infection is even a possibility , Think about all those wires being connected to your spine.. My mother got lucky by the grace of God that it did not penetrate the spinal column and I caught just in time. i dont even know how long it was there, my dad was putting a band aide on the hole , he cant even see that well, but never told me... I wish you all well that do have one, I also believe that anyone with them should have regular Ct's scans to check and see of the leads are connected rather than not and be sure you do not have an infection inside. after all unless you do this we can not see what is inside.. Sorry about my vent but i would hate to see anyone go though what my Mom has as well as your loved ones who must be your caretaker through all of this and I have my own enormous amount of chronic pain and my mother is a very selfish person who thinks my pain cant possibly be so bad and I should be able to all kinds of things for her,, I can not and will not.. She is probably the reason my own surgery went to hell. As I am sure you can tell I am very angry over all of this.. So I am taking a deep breath and trying to figure out where I can run away to... Best wishes to all..
I had a spinal cord simulator put in and I started not feeling well. No pain, just didn't fell well. I had a friend look at my back and take a picture and sent it to my dr. He called me in and immediately told me to go to the ER which I did. I stayed the night with IV's etc and thought this would do the trick. I still didn't feel well. I called the surgeon who was head of neurosurgery at UCSF. He asked me to meet him at the ER at UC at 7:00am he next morning. I was in surgery at 9:00.
The leads in my spine were infected and it was a matter of hours until it would have been a critical issue.
The whole thing was removed.
The issue here is that there wasn't any pain. Be aware of what feels correct in your body.
I, too, had the Spinal Cord Stimulator put in. I, too, had zero relief from the pain from which I’ve suffered for 15 years. I’ve had multiple surgeries for scoliosis which did indeed help straighten my spine; however, left me with unrelenting pain. Unfortunately, the SCS did not EVER relieve me from this awful pain. I was very disappointed, to say the least.
So, the moral of my story is I’m still on narcotics after 15 years. Very, very upsetting.
I am sorry it did not work for jnd2023. I had SCS put in March of this year. I am fused from S! to T5 and I have little pain. I have stiffness and tightness in my para-spinal when I do not work my program. There were many adjustments and I am mostly pain-free. I work hard to keep my muscles alive by working with a trainer using bands, balls, rollers, and deep massages.. I am a firm believer that one should keep a routine of movement to keep the area loose. and supple.
I am reading about the relief of pain and wishing I could believe it is a solution, I had surgery last year , which was a laminectomy of L,,4,5,6 or 3, 4, 5 can;t remember which as well as baseball size chunks of arthritis. This surgery was the only one I allowed my Neurosurgeon to do, even though I have severe scoliosis and everything else with an S. plus herniated disks etc. My spine has shifted a great deal to the right side as well as protrudes , so my anatomy has changed, Looks pretty bad from the back as well as a large hard bulge next to the lower spine. No one can tell me what it is.. After my surgery I had relief and that bulge no longer hurt, now it is all back and the sciatica in the right leg is a constant unless I am laying down in bed. I am on my feet all day and running all over, I do my treadmill for 2 hours a night but cant walk down the street or in a store without intense pain. Waiting on a new MRI. I write this because the stimulator sounds like the cure for all . My mother had a lot of back issues, she had 2 surgeries that failed, or maybe it was her not doing PT or being active,, she had one of the first St, Judes stimulators put in,, the thing never worked right, a rep had to constantly adjust it.. She had it taken out and my Dad and I begged her not to put another one in.. but they talked her into the new version of St, Judes, so she had that put in about 4 or 5 years ago. I do not think it ever really worked as she was always taking percocet. and no longer walking without the walker, even after 2 knee replacements,, Approx 2 years ago,. I found she had a quarter size hole in her lower back near the spine. after months of wound care, finally one smart DR, looked at it and said the Stimulator was loaded with bacteria and infection and had to come out.. NO ONE wanted to touch her. It was my surgeon last year who said he would remove it. In doing so , the leads were disconnected . they have lead in them. it is a foreign object you are putting in your body,, he firmly believed that the stimulator ate through her back and the hole was so big and open you could see her spine.. It has been a year and a half of hell , I almost lost her at one of the rehabs where she got covid and then Mersa on the incision where the surgery was done. fast forward she had surgery to close the hole that was now the size of a nerf ball from the Mersa . fortunately she had enough loose skin to do this.. She is now healthy and gained all the weight back from being very frail.. too much weight as all she did in this Nursing home was lay in bed, very little PT and in diapers.. She did not go in any of these places in diapers.. She also did not belong on "Memory Lane" with dementia patients.. So I got her out of there and home with my dad,, his expectations of getting back the same wife went all to hell. as she is still now laying in a hospital bed in their bedroom, in diapers with a caretaker, PT , and my dad running all over, he is 87 she is 80 and lazy. I am not a believe on these stimulators and I do not mean to scare anyone who is thinking that this will take away all pains.As much pain as I am in knowing what I know I would never consider it.. You can get the same effects by getting a stimulator belt that you wear and targets the lower back as well as 10s units.. without the surgery and putting in a foreign body in your body that is not meant for these things.. NO ONE will warn you that infection is even a possibility , Think about all those wires being connected to your spine.. My mother got lucky by the grace of God that it did not penetrate the spinal column and I caught just in time. i dont even know how long it was there, my dad was putting a band aide on the hole , he cant even see that well, but never told me... I wish you all well that do have one, I also believe that anyone with them should have regular Ct's scans to check and see of the leads are connected rather than not and be sure you do not have an infection inside. after all unless you do this we can not see what is inside.. Sorry about my vent but i would hate to see anyone go though what my Mom has as well as your loved ones who must be your caretaker through all of this and I have my own enormous amount of chronic pain and my mother is a very selfish person who thinks my pain cant possibly be so bad and I should be able to all kinds of things for her,, I can not and will not.. She is probably the reason my own surgery went to hell. As I am sure you can tell I am very angry over all of this.. So I am taking a deep breath and trying to figure out where I can run away to... Best wishes to all..
I'm sorry you're having such a hard time and your mother also. I'm impressed you can do two hours on a treadmill, I'd be happy if I could do 1 hour. Infection is listed as a possibility for any procedure that requires cutting through your skin, not just SCS. You can look up what percentage have infection occurs for almost any procedure. SCS is 2-10%, total knee or hip replacement 1:100 or 1%0. The biggest foreign object I have in my body is my left titanium total hip replacement. Hopefully it's happy.
I had a spinal cord simulator put in and I started not feeling well. No pain, just didn't fell well. I had a friend look at my back and take a picture and sent it to my dr. He called me in and immediately told me to go to the ER which I did. I stayed the night with IV's etc and thought this would do the trick. I still didn't feel well. I called the surgeon who was head of neurosurgery at UCSF. He asked me to meet him at the ER at UC at 7:00am he next morning. I was in surgery at 9:00.
The leads in my spine were infected and it was a matter of hours until it would have been a critical issue.
The whole thing was removed.
The issue here is that there wasn't any pain. Be aware of what feels correct in your body.
I'm sorry you had to go through this. Since mine it relatively new, I check the incisions in the mirror, then have my husband look at look at them after every shower. I'm a nurse, he's not, so I frequently ask my nurse friends to look at them also. I appreciate you sharing that general malaise is also a symptom of infection, not just heat, redness, and swelling. I wish you the best.
I am in a similar situation, u am waiting on insure to approve my unit. I am scared it will not work but in other hand I am at the end of my ropes. I have had 2 surgeries, lame, and fusion of L4 -S1. Both failed. Since then the neurosurgeon told me he could do no more for me that my wc will allow but when my case was over come see him he will fix me right. Last surgery was in 2021 and he dislocated my hips to do the fusion leaving me unable to walk right and his answer was he can pin my hips if I thought that may help.... this dr was a highly recommended dr... since we just mice to the area. Went to a new neurosurgeon and he told me by the looks of my mri he can't fix what the other dr messed up but he thinks this stimulator will help. I have sciatica in both legs All the time. Can't sit for longer that 10 minutes before my legs go numb.... making driving a no go ... and they only give me pregablin for pain . My other question is ,is it normal for your tail bone to feel like it is going to fall off? I can t stand it anny more
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I, too, had the Spinal Cord Stimulator put in. I, too, had zero relief from the pain from which I’ve suffered for 15 years. I’ve had multiple surgeries for scoliosis which did indeed help straighten my spine; however, left me with unrelenting pain. Unfortunately, the SCS did not EVER relieve me from this awful pain. I was very disappointed, to say the least.
So, the moral of my story is I’m still on narcotics after 15 years. Very, very upsetting.
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2 ReactionsMy trial was brought a small amount of relief, so I was really conflicted about whether or not to go ahead with the implant. I thought that it would be more effective after implantation and my doctor (without coming out and flatly stating it) suggested that this was probably the only solution for meaningful relief.
It would be interesting to see the success rate statistics from the FDA trials that were conducted before the stimulators were approved for widespread use.
The question about whether or not to move ahead with a stimulator implant is so challenging. I empathize with all in this position. Unfortunately, no one can make this decision but the individual.
I'm really sorry to hear this. Did you have to go through a trial to qualify for implant or are you saying the trial gave you zero relief? I'm in the US and a trial is standard. I had over 50% relief with the trial so I recently had the implant. He told me going in that I would probably not get 100% pain relief but my life would improve significantly. Three different neurosurgeons had told me there was nothing they could do surgically that would relieve my L5 nerve pain and SCS might help. I'm at the beginning stage of finding the best program to use. The pain down my left leg is gone but I'm still having pain in the lowest part of my back with sitting for long periods. I've had one programming session with the rep and I understand it takes a few. He is in contact with me every 3-4 days to help with the 5 options he created. I'm so sorry the SCS wasn't for you, dealing with chronic pain is awful.
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Helpful -
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3 ReactionsI am reading about the relief of pain and wishing I could believe it is a solution, I had surgery last year , which was a laminectomy of L,,4,5,6 or 3, 4, 5 can;t remember which as well as baseball size chunks of arthritis. This surgery was the only one I allowed my Neurosurgeon to do, even though I have severe scoliosis and everything else with an S. plus herniated disks etc. My spine has shifted a great deal to the right side as well as protrudes , so my anatomy has changed, Looks pretty bad from the back as well as a large hard bulge next to the lower spine. No one can tell me what it is.. After my surgery I had relief and that bulge no longer hurt, now it is all back and the sciatica in the right leg is a constant unless I am laying down in bed. I am on my feet all day and running all over, I do my treadmill for 2 hours a night but cant walk down the street or in a store without intense pain. Waiting on a new MRI. I write this because the stimulator sounds like the cure for all . My mother had a lot of back issues, she had 2 surgeries that failed, or maybe it was her not doing PT or being active,, she had one of the first St, Judes stimulators put in,, the thing never worked right, a rep had to constantly adjust it.. She had it taken out and my Dad and I begged her not to put another one in.. but they talked her into the new version of St, Judes, so she had that put in about 4 or 5 years ago. I do not think it ever really worked as she was always taking percocet. and no longer walking without the walker, even after 2 knee replacements,, Approx 2 years ago,. I found she had a quarter size hole in her lower back near the spine. after months of wound care, finally one smart DR, looked at it and said the Stimulator was loaded with bacteria and infection and had to come out.. NO ONE wanted to touch her. It was my surgeon last year who said he would remove it. In doing so , the leads were disconnected . they have lead in them. it is a foreign object you are putting in your body,, he firmly believed that the stimulator ate through her back and the hole was so big and open you could see her spine.. It has been a year and a half of hell , I almost lost her at one of the rehabs where she got covid and then Mersa on the incision where the surgery was done. fast forward she had surgery to close the hole that was now the size of a nerf ball from the Mersa . fortunately she had enough loose skin to do this.. She is now healthy and gained all the weight back from being very frail.. too much weight as all she did in this Nursing home was lay in bed, very little PT and in diapers.. She did not go in any of these places in diapers.. She also did not belong on "Memory Lane" with dementia patients.. So I got her out of there and home with my dad,, his expectations of getting back the same wife went all to hell. as she is still now laying in a hospital bed in their bedroom, in diapers with a caretaker, PT , and my dad running all over, he is 87 she is 80 and lazy. I am not a believe on these stimulators and I do not mean to scare anyone who is thinking that this will take away all pains.As much pain as I am in knowing what I know I would never consider it.. You can get the same effects by getting a stimulator belt that you wear and targets the lower back as well as 10s units.. without the surgery and putting in a foreign body in your body that is not meant for these things.. NO ONE will warn you that infection is even a possibility , Think about all those wires being connected to your spine.. My mother got lucky by the grace of God that it did not penetrate the spinal column and I caught just in time. i dont even know how long it was there, my dad was putting a band aide on the hole , he cant even see that well, but never told me... I wish you all well that do have one, I also believe that anyone with them should have regular Ct's scans to check and see of the leads are connected rather than not and be sure you do not have an infection inside. after all unless you do this we can not see what is inside.. Sorry about my vent but i would hate to see anyone go though what my Mom has as well as your loved ones who must be your caretaker through all of this and I have my own enormous amount of chronic pain and my mother is a very selfish person who thinks my pain cant possibly be so bad and I should be able to all kinds of things for her,, I can not and will not.. She is probably the reason my own surgery went to hell. As I am sure you can tell I am very angry over all of this.. So I am taking a deep breath and trying to figure out where I can run away to... Best wishes to all..
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3 ReactionsI had a spinal cord simulator put in and I started not feeling well. No pain, just didn't fell well. I had a friend look at my back and take a picture and sent it to my dr. He called me in and immediately told me to go to the ER which I did. I stayed the night with IV's etc and thought this would do the trick. I still didn't feel well. I called the surgeon who was head of neurosurgery at UCSF. He asked me to meet him at the ER at UC at 7:00am he next morning. I was in surgery at 9:00.
The leads in my spine were infected and it was a matter of hours until it would have been a critical issue.
The whole thing was removed.
The issue here is that there wasn't any pain. Be aware of what feels correct in your body.
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4 ReactionsI empathize completely........you have my support and understanding. The stimulators are not the "fix-all" that they are advertised to be.
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2 ReactionsI am sorry it did not work for jnd2023. I had SCS put in March of this year. I am fused from S! to T5 and I have little pain. I have stiffness and tightness in my para-spinal when I do not work my program. There were many adjustments and I am mostly pain-free. I work hard to keep my muscles alive by working with a trainer using bands, balls, rollers, and deep massages.. I am a firm believer that one should keep a routine of movement to keep the area loose. and supple.
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Helpful -
Hug
3 ReactionsI'm sorry you're having such a hard time and your mother also. I'm impressed you can do two hours on a treadmill, I'd be happy if I could do 1 hour. Infection is listed as a possibility for any procedure that requires cutting through your skin, not just SCS. You can look up what percentage have infection occurs for almost any procedure. SCS is 2-10%, total knee or hip replacement 1:100 or 1%0. The biggest foreign object I have in my body is my left titanium total hip replacement. Hopefully it's happy.
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Hug
1 ReactionI'm sorry you had to go through this. Since mine it relatively new, I check the incisions in the mirror, then have my husband look at look at them after every shower. I'm a nurse, he's not, so I frequently ask my nurse friends to look at them also. I appreciate you sharing that general malaise is also a symptom of infection, not just heat, redness, and swelling. I wish you the best.
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Hug
1 ReactionI am in a similar situation, u am waiting on insure to approve my unit. I am scared it will not work but in other hand I am at the end of my ropes. I have had 2 surgeries, lame, and fusion of L4 -S1. Both failed. Since then the neurosurgeon told me he could do no more for me that my wc will allow but when my case was over come see him he will fix me right. Last surgery was in 2021 and he dislocated my hips to do the fusion leaving me unable to walk right and his answer was he can pin my hips if I thought that may help.... this dr was a highly recommended dr... since we just mice to the area. Went to a new neurosurgeon and he told me by the looks of my mri he can't fix what the other dr messed up but he thinks this stimulator will help. I have sciatica in both legs All the time. Can't sit for longer that 10 minutes before my legs go numb.... making driving a no go ... and they only give me pregablin for pain . My other question is ,is it normal for your tail bone to feel like it is going to fall off? I can t stand it anny more
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