Implantable neurostimulator for chronic pain

Hi My name is Jenny and I have a ware disease NMO very painful since I can’t take pain Meds I had the neurostimulater implanted on the nerves by my spine It wasn’t easy going thru the pain of getting it put in your awake and talking to them about if that’s a good nerve and even the anthetesic didn’t help me. But I had it for 6 mths but it never helped much it started hurting me more then helping but I’m super sensitive to anything cause of this disease destroys the myelin covering on my nerves . But it might work for you it might be worth a try cause I have a friend that also has a nerve disease and she’s doing great with hers she’s going back to work at school with teaching Lil guys. I will say a prayer for you God Bless You

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@zjandre

Like everything and every procedure there are good and bad results. I had over 80% relief with the temporary one. I had an excellent neurosurgeon do my surgery for my stimulator and amazing follow up with St. Jude. I can not praise my St Jude rep enough. She meets me any time I need her to and will answer any question that I have or research it and get back to be with an answer. Like every other thing I have done for pain relief I went into it with an open mind and asked a million questions. I had a great team for support. My Pain Mgmt Dr, my neurosurgeon's staff and the St Jude rep. all answered questions and helped the best to make my experience very plesent.

I LOVE MY STIMULATOR!! I sometimes turn it low when the pain is not as bad and I use a couple programs that are my favorites. When my pain is bad I turn it higher and if it doesn't feel as though it's working I change the program to get a different massage feeling. I have L-1 to S-1 pain and when it was implanted it was to help the area of L-1 to L-5. Since my back is continuing to bulge and the discs are getting worse around the area it seems to not work as well as I need it to some days. This is not the fault of the stimulator at all. It's just my discs continue to fall apart in my back. I can't expect something to do more than what it is capable of or in an area that it was not meant to work. But I love it. I also have sciatic pain and it helps immensely in that area. I can turn up the side that radiates pain and have it work stronger on that side. This helps so much.
A lot of people say they feel like it's lightening shooting out of their legs or they feel really bad vibrations from it. I have never had any of that unless I turn it up way too high for what I need. I even have the older model.
I love the ability to have several programs or massages types added. So if one seems like it doesn't work or feels like it is working less, I just try another program. I have a great relationship with the rep and see her about once a year. She adjusts it and the area I need more help with and adds whatever programs I want added to it. We have sat several times in the office and just gone through the programs. She adds them to my device and turns them on, it I like the way it feels I keep it. If not she deletes that one and we try another one. It is a long process but it feels good to try the different options. She will load my device with several of them and I can change them whenever I want to by just calling her and meeting up with her.
I have had it for about 5 years now and I believe it has kept the pain in a reasonable, manageable position for me.
The drawback to it is that once implanted it only works for those specific discs that it was implanted for. So if my neck hurts like it does this morning it will do nothing for me. I will eventually need another one implanted for my neck my Dr thinks.
I also find that turning it up makes me feel energetic and "stimulated" and helps me get motivated to get moving and get stuff done. Sometimes I feel the sensation on my legs makes me cold in the summertime air conditioning so I have to adjust it several times in the summer days.
All in all I Love My Stimulator!! If you have any questions feel free to reply to the post and I will try to give you personal experience type answers if I can.
Thank you for posting and I hope you find some relief. ❤️

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I thought I would bring everyone up to date on my hopes of getting a pain pump. I saw my pain doctor this morning. I am not a candidate for the pain pump. I am so disappointed and discouraged. I will bounce back, but today I am depressed. I had my hopes up once again. Oh, well. with God's help, I will be ok.

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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?

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I have had an implantable nerve stimulator for approximately 4 years and have had very good results from it. I have neuropathy mainly in the soles of my feet and have been pleased with it. Of course it doesn't completely take away the pain but it is lowered to a more reasonable level. I also have the pain in my legs and feet but it has been pretty well contained by Lyrica.

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