Has anybody had an implantable neurostimulator for chronic pain?

Posted by zjandre @zjandre, Apr 13, 2016

Has anybody had an implantable neurostimulator for chronic pain?

Liked by bekie, grandmaR

Jim,
They usually want to wait and do it after 2-3 months when they heal in place. But you can talk to your doc and see what he says. It’s just a simple X-ray.

I hope I did not get you worried when I brought that up. I just want you to have the best possible conditions for success.

I apologize for my synicism in the pervious post. I should not have put that in.

I don’t think that is very common. When mine moved the Dr. and the rep said it was very unusual. My original doc said they had a professional hockey player go back to playing after one week.

That being said, once it has healed in your Dr could order one to check.

Again I did not mean to cause any stress or doubts about your Dr.’s surgical ability, I just wanted to encourage you to take good care when you are healing.

Carl

REPLY
@cbrackle

Jim,
They usually want to wait and do it after 2-3 months when they heal in place. But you can talk to your doc and see what he says. It’s just a simple X-ray.

I hope I did not get you worried when I brought that up. I just want you to have the best possible conditions for success.

I apologize for my synicism in the pervious post. I should not have put that in.

I don’t think that is very common. When mine moved the Dr. and the rep said it was very unusual. My original doc said they had a professional hockey player go back to playing after one week.

That being said, once it has healed in your Dr could order one to check.

Again I did not mean to cause any stress or doubts about your Dr.’s surgical ability, I just wanted to encourage you to take good care when you are healing.

Carl

Jump to this post

You didn’t cause me any more concern. The rep and the doctor stressed the importance of not bending, twisting, lifting or reaching above my head, and I’ve been doing all those things, though with caution. Tonight my feet are burning and in a lot of pain and my back is quite sore. I did little today after church – took a sound nap and did some watering outside. I’m so ready for this to end.

Jim

REPLY
@cbrackle

Jim,
They usually want to wait and do it after 2-3 months when they heal in place. But you can talk to your doc and see what he says. It’s just a simple X-ray.

I hope I did not get you worried when I brought that up. I just want you to have the best possible conditions for success.

I apologize for my synicism in the pervious post. I should not have put that in.

I don’t think that is very common. When mine moved the Dr. and the rep said it was very unusual. My original doc said they had a professional hockey player go back to playing after one week.

That being said, once it has healed in your Dr could order one to check.

Again I did not mean to cause any stress or doubts about your Dr.’s surgical ability, I just wanted to encourage you to take good care when you are healing.

Carl

Jump to this post

Jim,
I found that the inscision areas were tender off and on depending on my activity level after the first week or so.

I think I asked before, but did they turn on the burst program yet? Or is it in standard mode? One way to check is to look at your controller and the display should say:
Program Burst
Mode Cycle – On
Remaining < 1 minute

It will cycle between the two screens I inserted pics of.

I’m sure they told you that you can contact them with questions.
I would suggest calling your technician. Mine told me that with the burst turned on, if it is set too high, it can actually cause the same buzzing/tingling feeling that you get w neuropathy.
Also, they should be able to meet w you somewhere to check and readjust your levels if necessary.
Note, they will tell you it can change as it heals into place. They r correct, but you should be getting some relief.
Don’t be affraid to be pushy. I found I got put aside or forgotten unless I was persistent.
Carl

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IMG_2069

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Hi. I’ve tried just about everything else. I need to get a psych report for the insurance to pay. Can’t find a psychiatrist who is accepting new patents. My practitioner likes this modaility. Would welcome other comments. Thank you.

REPLY
@ayankeeinnm

Hi. I’ve tried just about everything else. I need to get a psych report for the insurance to pay. Can’t find a psychiatrist who is accepting new patents. My practitioner likes this modaility. Would welcome other comments. Thank you.

Jump to this post

I did as well. Dr William Mauck did my Stimulator and one of psychologists at Mayo did my evaluation

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@ayankeeinnm

Hi. I’ve tried just about everything else. I need to get a psych report for the insurance to pay. Can’t find a psychiatrist who is accepting new patents. My practitioner likes this modaility. Would welcome other comments. Thank you.

Jump to this post

@ayankeeinnm

My pain specialist told me who could do the psych evaluation. It only takes 15 minutes. I had to wait 2 months to get an appointment. An lcsw (licensed clinical social worker) who has a masters degree can do it. You might try calling public health department. I’d just be persistent until they get you in. Speak up for yourself.

Jim

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@ayankeeinnm

Hi. I’ve tried just about everything else. I need to get a psych report for the insurance to pay. Can’t find a psychiatrist who is accepting new patents. My practitioner likes this modaility. Would welcome other comments. Thank you.

Jump to this post

Jim et al.

My insurance company requires a psychiatrist.  My psychiatrist refuses to write the letter because he is not familiar with the device.   I have been seeing him for seventeen years.  There are two other psychiatrists within 100 miles.  Neither is accepting
patients.

I read the posts again today and found a lot more failures than successes.  Don't really know what else to do.  Have read the distractions but not for me.

Thank you for caring.

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@ayankeeinnm

Hi. I’ve tried just about everything else. I need to get a psych report for the insurance to pay. Can’t find a psychiatrist who is accepting new patents. My practitioner likes this modaility. Would welcome other comments. Thank you.

Jump to this post

@yankeeinnm

That’s strange and unfortunate that the psychiatrist won’t do the evaluation. I’m going to talk with the local company rep and ask him what you can do. I’ll get back to you.

Jim

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@ayankeeinnm

Hi. I’ve tried just about everything else. I need to get a psych report for the insurance to pay. Can’t find a psychiatrist who is accepting new patents. My practitioner likes this modaility. Would welcome other comments. Thank you.

Jump to this post

Thanks, Jim. I know the psychiatrist pretty well. He does not see clients personally. Has three med ladies and four counselors. I have only followed this thread recently. Have read only of failed neurostimulators. Would much prefer to read stories of successful implants.

Liked by ahsatan

REPLY
@ayankeeinnm

Hi. I’ve tried just about everything else. I need to get a psych report for the insurance to pay. Can’t find a psychiatrist who is accepting new patents. My practitioner likes this modaility. Would welcome other comments. Thank you.

Jump to this post

@yankeeinnm

So far, I’m very happy with my stimulator. After 4 weeks of healing from the surgery, it has stopped more than 80% of the pain. It’s only been a week, so that’s not a lot to go on, but so far, so good. You can ignore all of the complaints about the vibrating people feel when it’s on, or even after it’s been turned off. With the new Burst DR, you don’t feel anything. The only time you feel the vibrating is when they program it, but when they’re done with that, you don’t really know it’s on, except for the relief from pain.

It doesn’t work for everyone, hence the trial. If the trial implant, which is a minor surgery, gives you at least 50% relief, you will qualify for the permanent implant.

My only complaint this early in the process, is that the battery pack that’s placed like a pacemaker bothers me. That’s because I’m thin, so it’s close to the surface and is very visible, and it hurts still to lie on it or wear pants that sit high on the waist. Mine is placed just above my belt line. This is one time when a little body fat around the middle is a good thing.

Jim

REPLY
@ayankeeinnm

Hi. I’ve tried just about everything else. I need to get a psych report for the insurance to pay. Can’t find a psychiatrist who is accepting new patents. My practitioner likes this modaility. Would welcome other comments. Thank you.

Jump to this post

Hi, Jim,

Like your dog. Thanks much for the info. I’m waiting for approval from the insurance company. Please keep posting.

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I recently had Nevro spinal cord neurostimulator implanted and one thing that concerns me is that some patients don’t realize that the spinal cord neurostimulators are not all the same. My implant was to treat chronic pain from a neck injury that happened some 20 years ago. Some of the neurostimulators use a low frequency stimulator, some a high frequency signal and others a burst signal. I have a high frequency signal from the Nevro implant and I chose this one after researching everything I could find online and talking to pain doctors. Also my brother-in-law is an anesthesiologist MD (which is the general field for pain doctors with pain doctor as a sub specialty) and he also helped me navigate this decision. I chose the Nevro because it affected a larger area for pain relief, had fewer side effects and it is the latest technology. The Medtronic which uses a low frequency signal did not cover pain down my arms and it’s pain target area is a more local to the leads location. From what I have read I believe the St. Judes is similar in its pain target coverage. The Nevro SCS (spinal cord stimulator) covers typically both sides of the body, both of my arms and shoulders. A doctor might tell you that the Nevro SCS is radicular in its coverage of pain meaning that the pain that radiates through the nerve path down the arms and legs is covered. The lower back implant from Nevro is also supposed to be better for covering pain down both legs than the other implants (if they do at all). The Nevro SCS does not have the side effect of paresthesia or tingling when the wires get crimped like when turning the head to look behind you when driving to change lanes. The Medtronic and the St. Jude have this side effect and you are not supposed to drive with these implants turned on. The Nevro SCS uses a high frequency signal that is patented and according to my pain doctors is leaving the other SCS implants in the dust. The Nevro currently has one drawback and that is you can’t have a MRI with this implant. They are other tests that can be done for diagnostic purposes so it was not a deal breaker for me. The Nevro SCS also needs to be recharged usually every day but it is easy, pain free and now part of my routine. It may be that the other SCS devices may meet specific needs that the Nevro doesn’t but your doctor will know best in any case because I don’t have the knowledge or expertise to comment about all of the applications of these devices. If the pain specialist you are seeing is not using the Nevro find a doctor who does at least to get a comparison. I have seen some MDs that have not used the Nevro device yet since it is newer and they were not early adapters to the new technologies. Sometimes caution is good but not in this case in my opinion.

The relief I had from the trial was incredible even with the wires sticking out my back. The surgery recovery wasn’t fun but surgery never is and this really was a minor issue when I looked at the big picture of the possible pain relief. Keeping from bending and twisting was a trial after the implant for me but at about six weeks I was back to most things I had done before. (My dogs too suffered as I couldn’t boost them up on my bed and they were quite put out by that new development.) The reason for the restrictions is to keep the leads in place and also to keep the leads stable. The leads need to heal into the flesh or almost scar in and this prevents them from moving later on. I had at least 80% relief with the trial and currently I am still having the implant program adjusted to get the best possible pain relief.

I now realize that the trial isn’t always duplicated entirely with the implant. A slight change in positioning of the leads of a millimeter can change the effectiveness of the program so said the technician I am seeing. She said sometimes with time and healing the program that you are using may need changes. The body can change its response to a signal and since it can take awhile before things settle down post surgery, adjustments will probably be needed. My Nevro technician said not to fear however since the leads cover all of the spine in the area selected and it was a matter of changing the program to compensate for any changes. So patience is my post surgery motto. When I read about implant patients who give up right away I am saddened that they may not have reached their pain relief goals because they didn’t stick with it. It’s the old adage of don’t throw the baby out with the bath water when things get a bit bumpy. The reality check here is expect that SCS implants probably will need programming changes. It just doesn’t go in and work without some tinkering of the program. My Nevro tech also said your response to your SCS can change through out the SCS’s residence in your body but once again the program can be changed to better address your pain so contact your Nevro tech and get it adjusted. The programming does depend on your input as each of us is unique in our response to the SCS so it is a trial and error process but an educated one with the technicians expertise and training.
Currently I am trying out my second reprogramming of my device. It isn’t at the same relief levels as the trial but I am keeping the faith that it will get better. The trial I have kidded was like a religious experience. It was like lifting off the forty pound knapsack I had been forever carrying from my injuries from severe whiplash. I am not quite there yet but I have just started. Hope this helped some of you and I will keep you posted.

Liked by ahsatan

REPLY
@cjpeterson

I recently had Nevro spinal cord neurostimulator implanted and one thing that concerns me is that some patients don’t realize that the spinal cord neurostimulators are not all the same. My implant was to treat chronic pain from a neck injury that happened some 20 years ago. Some of the neurostimulators use a low frequency stimulator, some a high frequency signal and others a burst signal. I have a high frequency signal from the Nevro implant and I chose this one after researching everything I could find online and talking to pain doctors. Also my brother-in-law is an anesthesiologist MD (which is the general field for pain doctors with pain doctor as a sub specialty) and he also helped me navigate this decision. I chose the Nevro because it affected a larger area for pain relief, had fewer side effects and it is the latest technology. The Medtronic which uses a low frequency signal did not cover pain down my arms and it’s pain target area is a more local to the leads location. From what I have read I believe the St. Judes is similar in its pain target coverage. The Nevro SCS (spinal cord stimulator) covers typically both sides of the body, both of my arms and shoulders. A doctor might tell you that the Nevro SCS is radicular in its coverage of pain meaning that the pain that radiates through the nerve path down the arms and legs is covered. The lower back implant from Nevro is also supposed to be better for covering pain down both legs than the other implants (if they do at all). The Nevro SCS does not have the side effect of paresthesia or tingling when the wires get crimped like when turning the head to look behind you when driving to change lanes. The Medtronic and the St. Jude have this side effect and you are not supposed to drive with these implants turned on. The Nevro SCS uses a high frequency signal that is patented and according to my pain doctors is leaving the other SCS implants in the dust. The Nevro currently has one drawback and that is you can’t have a MRI with this implant. They are other tests that can be done for diagnostic purposes so it was not a deal breaker for me. The Nevro SCS also needs to be recharged usually every day but it is easy, pain free and now part of my routine. It may be that the other SCS devices may meet specific needs that the Nevro doesn’t but your doctor will know best in any case because I don’t have the knowledge or expertise to comment about all of the applications of these devices. If the pain specialist you are seeing is not using the Nevro find a doctor who does at least to get a comparison. I have seen some MDs that have not used the Nevro device yet since it is newer and they were not early adapters to the new technologies. Sometimes caution is good but not in this case in my opinion.

The relief I had from the trial was incredible even with the wires sticking out my back. The surgery recovery wasn’t fun but surgery never is and this really was a minor issue when I looked at the big picture of the possible pain relief. Keeping from bending and twisting was a trial after the implant for me but at about six weeks I was back to most things I had done before. (My dogs too suffered as I couldn’t boost them up on my bed and they were quite put out by that new development.) The reason for the restrictions is to keep the leads in place and also to keep the leads stable. The leads need to heal into the flesh or almost scar in and this prevents them from moving later on. I had at least 80% relief with the trial and currently I am still having the implant program adjusted to get the best possible pain relief.

I now realize that the trial isn’t always duplicated entirely with the implant. A slight change in positioning of the leads of a millimeter can change the effectiveness of the program so said the technician I am seeing. She said sometimes with time and healing the program that you are using may need changes. The body can change its response to a signal and since it can take awhile before things settle down post surgery, adjustments will probably be needed. My Nevro technician said not to fear however since the leads cover all of the spine in the area selected and it was a matter of changing the program to compensate for any changes. So patience is my post surgery motto. When I read about implant patients who give up right away I am saddened that they may not have reached their pain relief goals because they didn’t stick with it. It’s the old adage of don’t throw the baby out with the bath water when things get a bit bumpy. The reality check here is expect that SCS implants probably will need programming changes. It just doesn’t go in and work without some tinkering of the program. My Nevro tech also said your response to your SCS can change through out the SCS’s residence in your body but once again the program can be changed to better address your pain so contact your Nevro tech and get it adjusted. The programming does depend on your input as each of us is unique in our response to the SCS so it is a trial and error process but an educated one with the technicians expertise and training.
Currently I am trying out my second reprogramming of my device. It isn’t at the same relief levels as the trial but I am keeping the faith that it will get better. The trial I have kidded was like a religious experience. It was like lifting off the forty pound knapsack I had been forever carrying from my injuries from severe whiplash. I am not quite there yet but I have just started. Hope this helped some of you and I will keep you posted.

Jump to this post

Welcome, @cjpeterson
Thank you for this detailed account of your experience with a spinal cord neurostimulator and for re-animating this discussion. I think @jimhd will be able to relate to your story.
How do they reprogram the device?

REPLY

The reprogramming is done by the Nevro tech with a wifi connection from her laptop. She places a small transmitter next to you near your implanted device. The more information you can give her about what worked or didn’t work with the program you were using will help these techs pinpoint that sweet spot that gives maximum pain relief. It takes a couple of days for the changes to be absorbed by your nervous system and feel its effect. You can after a couple of days increase the frequency or power to see how that feels. I found it interesting that more power is not always more better when it comes to these implants, Too much power can sometimes cause pain. It is important though to try higher settings just to see how it affects you. It really can feel too high I have found out; it was an odd sensation of just being a little buzzed but not in a good way. I was advised to go back to a lower setting. My implant is in the cervical area or neck and have been told that is bit more sensitive than the lower back. Generally they give you two new programs and keep one that stays the same when changing the leads programming.

Liked by ahsatan

REPLY

I have had chronic nerve pain, in one very specific area on my right upper chest, for over 11 years now. About 2 years ago I asked one apparently well respected pain doctor in my pain clinic if a spinal neurostimulator was an option for me. She said it was not. While she spent 5 minutes with me, other doctors there had spent a lot of time trying different medications, interventions, etc. with me. The doctors can’t absolutely figure out where the pain come from, but think it’s from my spinal cord at about T3 or 4. The pain clinic ran out of ideas for me so I am no longer a patient there. I am still seeing a neurologist, however, who is always thinking outside the box. Do you have any idea if this falls in his domain? He has found lesions in my spinal cord which look similar to MS lesions, but aren’t. I have rambled on a bit. My basic question is about the use of neurostimulators and if anyone knows what they are best used for.

Thanks and I’m pleased for you and all those who have had positive results.

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