Has anybody had an implantable neurostimulator for chronic pain?
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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.
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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.
Like your dog. Thanks much for the info. I’m waiting for approval from the insurance company. Please keep posting.
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.
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?
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.
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.
Great question about neurostimulators. Are you eplying by email? If so, I suggest clicking on VIEW & REPLY at the bottom of this notification. It will take you to the full conversation, where you can see @cjpeterson‘s great account of his experience with neurostimulators just a few posts above yours. I think it will help with your question.
@miro, what has your new neurologist said about stimulators?
I have written about my scs implant in previous posts. I had been having more pain in my feet and toes, so on 11/30 I had the generator adjusted so it reaches my toes. I have a Burst DR stimulator, implanted in June of this year, and this was the second adjustment made since the implant. It’s something that’s common procedure for the scs.
I have idiopathic peripheral neuropathy, with the most pain in my feet, in addition to the pins and needles and numbness. It’s a severe burning pain which was reduced by around 80% with the trial implant, and continues to give me significant relief. I do have pain when I stand or walk on hard surfaces for very long, but rest and Lidocaine cream take the edge off.
I have both autonomic and small fiber neuropathy, which I’m still trying to figure out.
The Burst DR technology transmits signals to the nerves, with no physical sensation. Other technologies generate vibration that can be felt anytime the stimulator turns on. If the adjustment I had done a few weeks ago doesn’t do the job, my understanding is that the technician will switch to the other type of stimulation that I’ll be able to feel. That’s something I had hoped to avoid because of the many negative comments I’ve read. I still hope I’ll be able to stay with the Burst DR system.
One thing that is a real advantage to me with the St. Jude scs is that it’s MRI compatible. I have had numerous MRIs, so that’s important to me. I know that there are other imaging options, but I want to have the MRI available.
I’m happy to answer any questions you might have, and am always interested in hearing the experiences of others.
The scs technician said stimulators are used for quite a number of areas of the body.
Hello. I have experienced neuropathic pain for about 10 years stemming from multiple unsuccessful surgeries on both feet. I have tried Neurontin and Lyrica with mind numbing brain fog and extreme tiredness side effects coupled with poor pain control. Cymbalta gives a very small benefit. TENS units just give an annoying alternative pain distraction for me. I have been successfully treated with Vicodin and Oxycodone over most of this period with realitively small dose increases. However, my doctor seems to be feeling the anti-opioid hysterica and is strongly suggesting that I undergo a trial for a neurostimulator. Could some of you folks give me some details of what a trial entails. (1) For example, can the temporary device be installed in an office setting or must it be done in a surgicenter or as a hospital outpatient? (2) What kind of anastasia is required, just a local, or something more? (3) How long does the test period last? (4) How does one bath with the temporary device in place? (5) Why does it seem many people have positive results with the test, but less benefits with a permanent installation? Thanks for any guidance or advice!
I think that these questions and many others would be answered if you’d go back to the beginning of the discussion and just read through the comments.
If you have any problems finding the discussion, let me know, and I’ll try to direct you there.
I have read many posts all of which were interesting. I did find a partial answer to my question 5); however, I did not find answers for questions 1) through 4). Therefore, I will take you up on your offer to give me some specific directions.
Thanks so much.
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