Mayo Clinic Connect
Has anybody had an implantable neurostimulator for chronic pain?
Liked by bekie, grandmaR
I have chronic pain from spinal issues. I went through the trial phase of the spinal stimulator. The person who connected the stimulator did a horrible job. The wires were not attached appropriately and kept shocking me. I had to go to the doctor to meet with the stimulator rep everyday for 3 days. They did not do anything. As a result, I did not go for it.
I am currently living in a new state and having a horrible time with my pain. If surgery is not the answer, I would not be surprised if a spinal stimulator will be suggested. I’ll have to think long and hard about it.
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I’m sorry you had such a bad experience with the stimulator implant. I hope you’ll consider having it done by a competent surgeon. I’ve had significantly reduced pain in my feet from the spinal cord stimulator implant in June last year.
Let us know how things go in your new home.
I am so HAPPY for you that the stimulator is working. You are the first person I “know” who has had one. You give me hope.
As I said, I felt the shocks when I moved. Please tell me, do you FEEL the stimulator when it is working?
Thanks so much,
I had it installed Jan 3rd of this year. I found out yesterday that the insicion that holds the battery opened up.
Ive been telling my Dr from the beginning that I think I’m allgeric to it as I broke out in hives right after having it put in. Today’s Feb 7th and I still have miserable hives. After seeing my Dr yesterday, he believes me. That wound shouldnt have opened up. Now I’m on antibiotics and am having a vacuum put back on it. If the wound doesnt close between now and my next appointment on Feb 16th, it’ll have to come out. In terrified. That surgery was no walk in the park.
Good luck. I hope you find the right surgeon to do it!
Ronnie, I have a Burst DR stimulator, so I don’t feel any vibration. I didn’t have any problems with either the trial or the permanent implant. I was sore for awhile, and because I’m thin, it was uncomfortable to lie on my left side where the generator is, for a couple of months. I still feel it if I’m on a really firm mattress. The surgeon and the St. Jude rep both did their jobs well.
The first six weeks it’s important not to bend over or pick up any weight, until the leads have been securely healed into the skin and there’s no risk of them moving. Until the surgical adhesions healed, the leads can’t send messages well to the nerves in the feet, so the rep didn’t turn the generator on until then. After that, I went in and had it adjusted 3 or 4 times. The last adjustment was at the end of October.
The rep warned me that if he had to increase the signal any more, I would feel some vibration. I chose to have the Burst DR just for that reason, so I wouldn’t feel anything, so any further pain, I’m trying to treat with rest and being careful about what shoes I wear, and some pain medication. I often have very little pain the past few months. Usually when I do, it has to do with the shoes and socks I wear, and the amount of walking I do. I used to have to put lidocaine cream on my feet every night in order to sleep, but I use it much less often now.
So, eight months out, I’m quite pleased with the results. My experience has been less pain, less depression, but depression and other issues aren’t only connected with the pain.
It is a good idea to research the doctors who do the implant in your area. Not all of them have the experience and training they need.
I’m sorry you’re having such trouble with your surgery. I don’t know if it has to do with the surgeon’s level of expertise, or what, but you shouldn’t be having the problems you are. For me, the surgery went well, and I didn’t have a painful recovery at all. I was sore, and had to take it easy for six weeks, but my experience was surely different from yours.
I hope you get things straightened out and can get on with a successful experience with your stimulator.
I’m pretty confident I had an excellent Dr.
He told me that its rare (like2%) of the people who get them have the pain in their ribs like i have. My incision opened up now where three battery is so I’m fairly sure it has to come out. I have been ill since I had it put in . For some odd reason my body isnt excepting it . they put the vacuum back on it and I’m taking antibiotics. If it doesnt close before the 16th its going to be removed
Happy to hear yours is a success.
Anyone out there had a spinal cord stimulator implanted for brachial plexus avulsion pain
Liked by Jim, Volunteer Mentor
I moved your discussion in an existing discussion called, "has anybody had an implantable neurostimulator for chronic pain." I moved your message so you could read through the other posts from our members and learn a bit about their experiences with a spinal cord stimulator. I recommend clicking on VIEW & REPLY so you can read through the discussion and participate where you feel comfortable.
@12165008021954, If you are comfortable, would you mind sharing a bit more about yourself? Do you have a name or nickname you are comfortable sharing with the group to address you by? What questions do you have specifically about the stimulator?
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?
I was tested for one at the M health pain clinic but was not receptive. Instead I was given an intrathecal pain pump. A small pump implanted in my abdomen with a catheter running up my spine dripping 2.75 mg of Dilaudid into my spine every 24 hours. I also have a small remote which allows me to dose myself 10 times in a 24-hour period with another one tenth of a milligram per dose. This may not seem like much but taking your drugs this way is 300 times more effective than eating them. I had gotten to the point where no dose of oral narcotics was doing the job. This is the most effective pain control I have ever had and I would encourage anyone who can have surgery to have one of these or at least talk to your doctor about it. We're not supposed to make recommendations so I'm withdrawing my recommendation and saying it worked for me. I did have to wait over a year to get it as I was recovering from cancer and from chemotherapy and had a lot of chronic infections and they wouldn't give me the surgery for the pump until I had been infection free for one year. Best move I ever made. Thank you Doctor Park and thank you University of Minnesota.
Wow, that sounds like something I need to look into. The only pain med that has ever worked for me is Dilaudid. I was taking 32 mg extended release Dilaudid plus rescue pills. This year the insurance company sent me a letter that I was taking over the “new limit” of 8 mg ER. I have worked myself down yo 16 mg but my pain is more debilitating than it has been in years (and I have 2 spinal stimulators, which do help but not on all my pain as I have pain all over my body in every joint).
I think I am going to get signed up for med marijuana on my next visit so I can see if it works on my pain at all.
I’ll research the pain pump idea as an alternate.
This was suggested by my former Pain Specialist, but she moved away. The Pain Specialist I have now hasn't suggested it. Maybe because of my age. I am 82 now. The pain stimulator didn't help me at all. Finally had it removed. I am so glad this is working for you. Thanks for sharing. Gives me hope!
Keep us posted, if you would, about how the marijuana works, Carl. I think that if I had the level of pain you have, I would be pursuing the pump like wsh67 has, especially since Dilaudid works for you. Having the pump would circumvent the new 8mg maximum, which is ridiculous.
If my pain were to become unmanageable, I think I'd have a talk with my pain specialist about the pump. It sounds like a great solution.
To each his own best solution.
Liked by Kanaaz Pereira, Connect Moderator
Get new insurance. No insurance company has the right to being to get between you and your doctor in your meds. 8 milligrams a day is a joke. Even with the pain pump I take 16 mg a day.
Liked by GailBL, Volunteer Mentor
I was tested for the neurostimulator but it didn't work. I used a TENS unit for years but all it did was Rock the skin underneath the pads. I hope it works for somebody it seemed to me to be another one of those Hoops you have to jump through before you get narcotics.
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