Mayo Clinic Connect
Has anybody had an implantable neurostimulator for chronic pain?
Liked by bekie, grandmaR
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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Your very welcome, good luck.
Would something like this work for fibromyalgia?
I have a Medtronic with paddle leads since 2015. I should have asked more questions about the procedure and what would happen if I changed my mind after I had the permanent placed. I assumed it would be flexible wire leads and it wasn't so when I went in for my trial, I had to have another laminectomy while I was awake so that they could put in my paddle leads. I then went home the same day and returned 3 days later. If I wanted the permanent, then they would put me to sleep and implant the rest. If I didn't want it, then they would put me to sleep and take out the paddles. I didn't have to wait or go through all that surgery over again but I could have done without another laminectomy since it was only a few months after my first one. It did help my pain for about half my nerve pain in my leg but did nothing for my back pain that is getting worse every day. I thought it was for both but it wasn't. I have a regular stim not the hf kind so it is a bit too intense sometimes with the buzzing. I wish I had waited since my nerve pain became manageable over time and my surgeon says he will not take my paddles out since it was small inside my spinal canal so I have to keep it even though I don't use it much anymore. Also, if you get paddle leads, you can't have an MRI even to the head. I wasn't told that before hand. Good luck hope that helps answer some questions.
@ursweetpam, I sit hearing drinking tea while I do my morning battery charge and it irritates me so much to read these posts where patients are not properly informed. One should always ask the doctor if he/she or the franchise has a financial relationship with the company whose product he is recommending. First, I went to a dinner sponsored by BostSci and listened to their speaker, and then I talked to my doctor, but red flags were already up when he and his associate were introducing the speaker.. Then I asked him what other products were out there. Then he got to Nevro, which sounded better for ME. I went home and talked to my neighbor, an engineer!, whom I knew had a stimulator. He is 80+ yr. old and could not walk up the steps to his office over the garage – that was for 2.5 yr. before getting the stimulator, a Nevro it turns out. Now he walks wherever he wants to, pain free. He just got back from a 2-week cruise in the Med. and Adriatic and explored everything. All, please ask about the leads and how reversible they are, if you can get an MRI. Remember, that pain you feels pales in comparison to someday being able to have an MRI detect cancer!!!! Ask about the battery life: how long before it'll require surgery to replace it. What's the latest model? When will the newest technology be approved. Maybe you should wait a few months for the newest: the difference usually being smaller size with same or better battery. How many programs does the stimulator hold and how many are available that can be introduced to your device if suddenly you're not getting the same relief. There have already been 2 programs stripped out electronically – only takes a few painless minutes – and replaced with two different ones in attempt to get relief for my neuropathy, in addition to my back. Treat it with the same skepticism you would buying a used car. Ask ALL of the question you can think of AFTER having done research. Remember, minimally invasive surgery is when someone else is getting it. They are implanting a device that may or may not exactly equal the trial results. These can be a savior, like mine, or a total bust. Don't jump into it. PLEASE
Liked by GailBL, Volunteer Mentor, patrick17
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.
Liked by GailBL, Volunteer Mentor
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
Liked by Justin McClanahan, GailBL, Volunteer Mentor
Try the pain pump. The narcotics don't touch your stomach or your liver. They go directly to the nerves in your back. 2.75 mg of Dilaudid a day. It's saved me..
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.
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. ❤️
You mentioned St. Jude rep. is that the hospital in Memphis, TN or from the company that made you stimulator. What area of the country did you have your surgery? In reading these posts, your post is the only one that seems to be favorable. My pain specialist has suggested that I go to a neuro-surgeon to discuss having the stimulator surgery. Reading comments here is scary for me!
The pump, the pump the pump, get the pump. Nothing scary, just relief and freedom from prescription renewal. (My God, you'd think I sell these things, I don't.
Why are you not a candidate?, Get a Second opinion. If you can tolerate surgery, I can't imagine why you wouldn't be eligible. Maybe your Doc doesn't want to lose a customer…..
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, I'm considering
Dont do it
@nebma, can you please share which brand stimulator you have? I was told my Nevro would be a "home run" for my foot neuropathy, but it's a total bust. BUT, I was also told it wouldn't work on my back pain, and it's 100% effective. They tried to keep my back program while adding a different one for the foot but to no avail. If it's a Nevro it would be helpful to know which program works for you foot. thanks!
Lyrica solved my foot neuropathy, problem with a little help from Amitriptyline
I want to try the implantable neurostimulator. I will ask my pain doctor about it.
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