Mayo Clinic Connect
Has anybody had an implantable neurostimulator for chronic pain?
Liked by bekie, grandmaR
Great story via Sharing Mayo Clinic how a spinal cord stimulator restored quality of life after a horrible accident.
Liked by John, Volunteer Mentor
@colleenyoung. I posted a msg to you
on how to get to Arachnoiditis group in Face Book. Please advise.
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Hi @toiolinger, Mayo Clinic does not host any facebook groups on arachnoiditis. There are however several active discussions about arachnoiditis here on Connect:
– I am desperate to find a dr who treats arachnoiditis. https://connect.mayoclinic.org/discussion/i-am-desperate-to-find-a-dr-who-treats-arachnoiditis-i-live/
– Arachnoiditis https://connect.mayoclinic.org/discussion/arachnoiditis/
– Any Adhesive Arachnoiditis members here? https://connect.mayoclinic.org/discussion/any-adhesive-arachnoiditis-members-here/
@colleenyoung – is there a thread for spinal stenosis? thanks barb barnes
@barbarn, members talk about spinal stenosis in both here in the Chronic Pain group (https://connect.mayoclinic.org/group/pain/) and the Bones, Joints & Muscles group (https://connect.mayoclinic.org/group/arthritis-and-joint-conditions-268850/).
There are quite a few different discussion threads with stenosis in the title, and many more where members mention spinal stenosis. Here are few with stenosis in the title that were active in the last year. @JustinMcClanahan may know of others.
– Spinal stenosis- lumbar https://connect.mayoclinic.org/discussion/spinal-stenosis-lumbar/
– Laser treatment for spinal stenosis? https://connect.mayoclinic.org/discussion/laser-treatment-for-spinal-stenosis/
– T.E.N.S. for spinal stenosis pain https://connect.mayoclinic.org/discussion/t-e-n-s-for-spinal-stenosis-pain/
Barb, it would be great to revive one of these or start a new discussion specific to spinal stenosis.
Liked by barbarn
@colleenyoung – thank you so much for the info. I will definitely try to get those read ASAP, but my husband has developed more acute problems, so this will have to go on back burner for a few days.
Liked by Colleen Young, Connect Director
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 havent gotten it yet
It’s time to open a new group dedicated to Spine Health.
So many of you are connecting on the topics of back pain, brachial plexus, disc degeneration, scoliosis, spondylolysis, stenosis, spondylopathy, etc. that it was time to give you a space dedicated to Spine Health. All current discussions about spine health have been moved to the new group and you will continue to get notifications about the discussions you participate in.
See the new group here: https://connect.mayoclinic.org/group/spine-health/.
– Follow the group
– Browse all topics
– Add a reply
– Start a new discussion
If you’re not sure how to do any of these things, see this step-by-step guide https://connect.mayoclinic.org/get-started-on-connect/.
@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!
Liked by Jim, Volunteer Mentor
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.
Liked by scruffy1
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.
Liked by Jim, Volunteer Mentor, scruffy1
@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.
Liked by Teresa, Volunteer Mentor
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.
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