Has anybody had an implantable neurostimulator for chronic pain?
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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!
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Here are my replies to your questions. Jim might remember better since my test was over 3 years ago.
1) it has to be done in a surgicenter or hospital as they use a type of xray to optimally position the leads 2) and use waking sedation to test where you feel the stimulation before bandaging them in place.
3) the test period is 5-7 days.
4) you can only shower – but honestly I cannot remember if they even allowed that. Might be a sponge bath deal.
5) I have 2 stimulators and I had the same experience w both. I think it is due to how the leads heal into place and therefore what they have direct contact to.
Thanks, Carl, for responding. I concur with your answers.
Thanks Carl for taking the time to answer my questions. It is very much appreciated.
My trial for the Nevro implant lasted about 7 days and the surgery was done at the pain clinic. The anesthesia or sedation is given intravenously and the medication is typically is one that offers a quick recovery. I believe someone told me they may want to talk to you during the procedure so they can bring you to consciousness quickly. The other thing I remember is that you don’t remember much after the sedation so have someone with you take notes. Bathing is tough as you absolutely cannot get the device wet. The nurses said it was a sponge bath situation. I put a stool in my bathtub and washed carefully with my hand held shower head. My hair was washed bending over kitchen sink using the sprayer to rinse. I put a plastic bag over my shoulders to protect the device. We are an extremely clean culture but bathing used to be every Saturday night. I don’t think th nurses approved of all of my methods but no harm was done. Pretend your camping and roughing it.
As to why the trial can be better than the implanted device? I don’t know. I am going through that now-great trial, not there yet with the implant. The programmer said In the first months your nervous system is getting used to the signal so changes to the program aren’t unusual. Sometimes scar tissue may change the lead positioning. She said a difference of a millimeter in the leads positions can change the programming so with such a small margin for error the programs used in the trial are not going to work the same. That sweet spot is still there but needs to be found again. There is the slight chance that the leads moved during the healing stage. My device is in the cervical area serving the head, shoulders and arms and may be more difficult to program than the lower back implant.
The only other thing I can offer here is pay attention to the type of device you’re getting. Google the different devices and see what they have to offer for your type of problem. My brother in law is an anesthesiologist and his partners like the Nevro. (Pain doctors start out typically as anathesiologists and pain treatment is a speciality.). The nevro SCS affects a larger area, is radicular in its coverage or follows the nerve path through the limbs. It may be better for neuropathic pain according to him. Make sure your doctor is at least using it, some doctors are very conservative about newer medicine not a bad thing but these devices can last 10 years so do your homework and ask the doctor why this device he selects is best for you. I wasn’t offered the Nevro at one clinic because the doctor hadn’t looked in to it yet. The Nevro is a high speed signal and the Medtronic and St. Jude are a lower signal strength. Nevro has patented their signal so no other device can do that speed legally. The Nevro doesn’t have to be turned off while driving or sleeping because you never feel the signal. The lower speed devices can give you a tingling sensation when bending your body or turning your head, a distraction while driving and disruptive during sleep. Good luck, Cathy
Many thanks for all the information. It gives me a lot to consider.
Thank you for your replies, Jim, Justin and cjpeterson (Sorry, I can’t see if you’ve signed your name.). I am seeing my neurologist this week, and will definitely be asking him his thoughts on the neurostimulator. He retired a few years ago, was bored and returned to work in a private group practice, so I assume no longer has the same access to the Montreal Neurological Institute that he had, but is still full of ideas. He knows all the meds, interventions and alternative treatments I’ve tried. I very much hope his opinion of whether or not the stimulator is appropriate differs from the pain clinic doctor I asked, several years ago.
I find it very helpful to have this chronic pain chat group. As so many of you have said, it’s hard to keep telling your thoughts, questions, etc., to people who don’t experience it – without feeling that I must be boring them silly!
Good luck to all – Gillian
Great. I’ve learned to be nearly obsessive about research, and recommend it to all. You might Google Burst DR before your appointment. I always like to go to my appointments as informed and prepared as I can.
As I’m sure you’ve heard many times that everyone responds to treatments differently. Option A might be wonderful to some and terrible to others. Option B might just be a total scam. I think that when it comes to medicine, we all keep practicing it until we find what works. It’s not just doctors who practice medicine. (Smiley face here)
I hope you have a productive appointment, @miro – Gillian.
Hi @zjandre, and welcome to Connect. I’m tagging @ladyjane85 and @mntnlaural as both members were recently discussing neurostimulators. I would also encourage you to check out the thread Chronic pain – Let’s Talk as I feel like you may find additional members to connect with in this group (https://connect.mayoclinic.org/discussion/are-there-any-discussions-for-chronic-pain/)
Are you considering an implanted neurostimulator or did you recently have one implanted?
Yes, a Boston Scientific for almost 10 yrs. Finally had it removed this year since I received no relief from it.
The neuropathy in my feet and ankles is getting worse, and is painful at night. Walking is pure muscle memory now, and shoes are very uncomfortable. Summer is great as I can wear open sandals.
Well, I had my appointment with my neurologist today and before I lose the little energy left in me, he also said I was not a candidate for a neurostimulator as no one (& I’ve consulted so many) knows the origin of the neuropathic pain and the reason for its intermittency – i.e. every evening & night but not every day – makes it even more confounding.
I was quite content being boring & predictable…but I guess that was not going to be forever! Back to strong coffee & scotch as the best helpers. Could be worse, right?
That is a bummer that you did not get the answer you were hoping for, but it must be encouraging that the opinions seem to agree and you won’t have to undergo a surgery or procedure. Did the neurosurgeon have any new ideas for you regarding your pain or pain management?
I had the stimulator installed for neuropathy in my legs and feet caused by a back injury. It was put in Jan 3rd, 2018. Today is the 18th. I need to know if any one of you got hives after having it put in? I stopped taking the antibiotics and muscle relaxers I was given post surgery because I am covered in huge welts that burn and itch to the bone! My Dr ordered me prednisone to help but its not helping. They’re worse than ever.
I can’t imagine whats caused this as I am using the same products as always and cant think of anything I. May have ingested or come in contact with that would have caused hives.
Has anyone else experienced this after receiving the implant stimulator?
I had great success with the trial but the perm implant has been a disaster. My wish was to have a better life after 30 years of severe nerve damage and four lumbar surgeries but it was the biggest mistake of my life. After reviewing the FDA site and other comments I recommend staying away from it. There are just to many problems and horror stories from placement surgery to problems years later. No matter how bad it is today we have to ask ourselves COULD IT BE WORSE? Chances are the answer is yes. Sorry for sounding bitter. I also have PTSD because I felt the doctor cut me open to remove the device. I can’t get past it.
Omg! You’re telling my story. The only difference is I just had this surgery on Jan 3rd , 2018. I feel like I was rushed into this surgery and also felt threatened by my pain management Dr. I feel like I was pushed into have ing that surgery. Since the surgery, I have been in horrible pain and am covered in hives from my scalp to my toes. I’ve never had them in my life and they keep getting worse despite medicine to get rid of them.
I’ve never felt so alone and helpless in my life.
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