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Has anybody had an implantable neurostimulator for chronic pain?
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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yes i havent gotten it yet
It’s time to open a new group dedicated to Spine Health.
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@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
My now-85-year old neighbor needed an MRI, so he had the impedance checked on his leads. ALL 8 were bad on one side of his back! The MRI was necessary so he had surgery to remove the entire Nevro unit including leads. He took prescribed opioids until he discovered 0% THC hemp oil which he now takes twice a day in place of the opioids… and with remarkable results. GO FIGURE!
I’ve had the trial. It’s a little weird but it helped rhe
pain from my back to my legs. I said 50 percent help until they took the 1 week trial away. I now know it helped 70 percent. I get the implant in 6 weeks.
I've had one since 2015.
The first one was great for about 6 months until it backed out of the spinal canal.
The 2nd one they put in didn't work at all, couldn't get it to power up.
The 3rd one, I could feel it, but couldn't get it to give the pain relief like the first one.
I turned it off for a year, then the Doc told me they had a new type of battery that has been getting good results. I had them put the new battery in and it works just like the first one. It's great, no more cane or pain meds! I get about 65 to 75% pain relief. When they first got it going I was getting about 90%, but I think because I'm doing more, it has dropped some, but still way better than before.
@user_chf56161a How are you feeling by now? Which stimulator did you get? Is it MRI compatible?
I had a Burst DR implant in June of 2017, had a huge amount of relief from the pain in my feet, and was told it was MRI compatible. I was all prepped for one, turned on the controller and it said MRI not advised.
I've met with the Abbott tech every three months to make adjustments, but the past 8+ months the changes have done nothing. I turned it off Sunday, August 11, the day after my 69th birthday, and I haven't felt any increase in the pain. Coincidentally I started a new medication that same day, imipramine, and I've had less pain. Maybe I've finally found a medication that I can tolerate and that helps with the pain.
I'm going to be talking with a surgeon the end of the month about a new stimulator that would be connected to my dorsal root ganglion. The Abbott tech is the one who told me about it, so I'm trying to get info from unbiased resources.
While my stimulator was working it was great, so I'm disappointed that it quit doing its job. I had hoped it would be a long term solution. Of course, this is my own story. I've read here that many people are happy with their stimulators after much longer than two years. I hope that will be true for you.
Thanks Jim, I have a Boston Scientific model. I do go in about the same as you for adjustments. So far so good. They are constantly making improvements, so you might want to check with your pain specialist to see if any have come out. I only had to have the battery changed out for the improvement in my condition. I am glad you found some medication that works. If something goes wrong with mine in the future, I'll ask my doc about it. Best of luck!
@ursweetpam @jimhd Latest news is that he's no longer getting enough relief from the hemp oil, has an appointment this week with the doc to explore getting the a Nevro unit reinstalled with new leads. His problem was that the impedance for all 8 electrodes on one side had a level exceeding 10,000 so he couldn't get an MRI. Now that he's gotten the MRI and addressed problems it uncovered, he wants a stimulator. I needed an MRI and had to get the levels checked, were all under 1000 but the people here at the SE Georgia Health System will still not do an MRI. We have to go up to an imaging center in Savannah, about an hour north. They gladly do them when they have the impedance levels certified. They merely require that you turn off the unit.
Just wanted to touch bases. As you know I had the Abbott Stimulator which tested good but upon installation and after 4 revisions gives me no relief.
I then had the DRG test and it was amazing. However, a few months after installation it lost its effectiveness on me also.
I’ve tried every tech in Oklahoma and now MN several times and they cannot get it to be helpful.
I’ve had them off for most of a year with tests when they try to readjust.
I was never told and did not have the initiative to find out that there were other options.
A friend asked if I had tried a Medtronic pain pump. I had to suggest it to my pain clinic and they said “yes, that sounds like a really good fit for you”. Can you believe they install them but never posed it as an option!
I had it tested and installed last January and it has been a literal life changer for me. It took a long time to get it titrated up, but it helps more than either/both stimulators combined and there is room for improvement as time goes on.
Just want to be sure you hear about the options before getting The DRG implanted.
I wish you he best of luck and am glad you found a med that helps.
Yes I have,I had the Stim Wave antennas implanted on either side of my spine back in April. In the beginning it worked very well and I experienced a 60 % reduction in chronic pain levels. BUT I fell in the process injured my right side "hip,upper leg and right knee) so I am dealing with that right now. I am still wear the Stim Wave units, pushing hard to recover the progress that I made in the beginning. Billl Coombs
I had a Medtronic SCS from 2006 to 2008. It worked fairly well. I had it removed as it stopped helping me. I happen to run into a Medtronic rep at my pain management doc & he said they are much better now. No parenthesis, longer lasting batteries & smaller. You do a trial first to see if it helps and if so, it is implanted. It is general surgery to implant it. definitely worth a shot.
@cbrackle Hi Carl. I don't know how I overlooked your post. But at least I didn't delete it without reading it.
My SCS has been turned off for two weeks now and I haven't had any more pain than when it was on. I found a lidocaine cream on Amazon and tried it out last night. I don't remember what I paid, but it was way, way cheaper. It seems that my feet have burning pain when I lie down in my bed for the night, even though they hadn't been hurting during the day. That's essentially the only time I use the cream, though I've used it during the day in the past.
I've wondered about the possibility of a pump. I'm going to see the surgeon who will do the drg implant – if I decide to go forward with it – on the last Friday of this month, and then the following Monday I have an appointment with the pain specialist. I'm going to talk with them about a pump. Someone else here has a pump for Dilaudid and it's been a life changer, if I remember correctly.
Right now I'm really active, working in the yard and around the pasture, and doing maintenance on the house and barn and garage, and working on one of our vehicles. I'm on my feet a lot, so I expect to have more pain than if I sat in my recliner all day. I've been taking morphine sulfate contin 3x a day, up from just 1 or 2 a couple of months ago. I think the Imipram is helping, though it's just a low dose. The pain doctor might up the dose when I see him in a couple of weeks. For arthritis I take Meloxicam and Tylenol, and I suppose it's possible that it helps with the neuropathy pain. I suppose that doctors will have me stop taking some of those. Did the pump reduce the oral meds you were taking?
One thing I'm concerned about is that if the pump doesn't work out for me, my doctor would probably refuse to prescribe the narcotics that I'm taking now. But there's no point in worrying about that stuff until I try the pump.
I'll go online this evening after I get home from church and do a little research. It would surely be nice if I could get relief finally. Thanks for telling me about your experience.
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