Mayo Clinic Connect
Has anybody had an implantable neurostimulator for chronic pain?
Liked by bekie, grandmaR
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 am considering one for more than 15 years of chronic neck pain. Tried every other thing imaginable.
And thank you.
Hi. How do i contact the persons mentioned in your reply? Thank you very much for the information. Kind regards. Andre
@zjandre, in the email notification, click on the link “View this reply here”, which will bring you to the discussion thread on the Mayo Clinic Connect website. Scroll through the messages.
To contact the people Alyse mentioned, simple post a message and insert their @username in your message. If you wish to send them a private message, click their @username and then click the envelope icon.
Great thank you
To zjandre – I had the trial for the neurostimulator made by St.
Jude bec no epidurals helped and I cannot take meds (big side effect
or no relief). This seemed like my last resort, so had the surgery to
put in the wires and battery pack. I had psyced myself up that I
finally would have the relief of my 8 – 9 back pain. I tried and tried
to make it feel that the stimulation shocks were dulling my pain – for
over a year I dealt with it where even after I shut it off at the high
density, my body began to feel it for up to 10 hours shut off. My pain
was still as bad, so finally relented to my 5th surgery and had it
removed. It is no better than a bit stronger TENS unit which never
worked for me either.
Liked by notavailible, pamperthyself
I sincerely appreciate your response. More portly I sincerely feel terrible for what you are experiencing . I’m also searching for a solution. In the meantime all we can do is try to do our best. my kindest regards
Liked by pamperthyself
I had a spinal cord stimulator implanted in my back in 2004 after several failed back surgeries (the first doctor was on cocaine when he was doing a per cutaneous dissection). I won’t go into the specifics of that but I was diagnosed with PTSD afterwards…it was bad. I was terrified to go back to an Orthopeadic doctor for many years afterward. The doctor I chose had an excellent reputation and he tried everything. I had a foronotomy, a laminectomy. A spinal fusion at L5 S1 level and in between all of that I had 2 spinal fluid leaks. The very first doctor almost severed my sciatic nerve and it never regenerated properly. I had to have a total hip replacement because I was walking incorrectly between the first and my present doctor. My pain management doctor had me on morphine for a full year although I was begging him to take me off of it. Finally off of the morphine the pain was unbearable! He then brought in reps for the stimulator. It initially took some of the pain away, about 25%,but at that point I was willing to try anything. I had the first one put in in 2004. Then I fell in early 2005 and the wires along my spine snapped off. So, I had to have a 2nd one put in. Another nightmare ensued because the pain management doctor did it without any anesthesia or numbing of any kind. My surgeon was absolutely furious after all that I had already been through. The representatives from Medtronic stimulator met with us several times to try to improve the outcome. Finally, 2 years ago I gave up on it and turned it on only rarely. Now I haven’t turned it on for the past year. I’m on a Fentenayl patch, but still have a lot of break through pain at times. They can remove the battery from my butt, however, the wires are so buried in scar tissue that it would be extremely risky to remove them. I was told I could never have an MRI because the wires are still in my body. Please make very sure that you’re getting at least 50% relief from the stimulator during the trial period or you may have the problems that I have. Also, try to find out if your doctor is being paid by the company to push the product. It happens quite often. Good luck with whichever you decide to go.
Liked by notavailible, tiger4250
@pamperthyself You have a lot of the problems w/your back as I have, but I am so sorry you had bad drs work on you.. My dr for 5 surgeries has always been the same neurosurgeon. You have been thru a lot; hope you sued the one on drugs. Pain management drs say they can do nothing more for me, being so sensitive to meds and nothing else that has worked. It is hard to live over 25 years with chronic pain. Good luck for better days…. ladyjane
Liked by notavailible
Although the doctor on cocaine did the same thing to 5 or 6 other people, we could not sue. Not a single person in the operating room would testify against him!! This was in 1989 and I think they were all afraid of losing their jobs or it was the good old boys network. Don’t know, but he sure affected my quality of life! I sincerely hope that you have found some relief. My husband always told me it was impossible for me to feel the stimulator even when it was turned off….thank you for validating me ladyjane!!!!
I recently had a spinal neurostimulator implant that went wrong. One of the lead wires flipped to the posterior side of the spinal cord. The plan was to leave it in and just not turn use that lead. However it was turned on. I now have involuntary muscle movement in my leg muscles 24-7 with an incredible amount of pain. I know the nerves were overstimulated causing muscle issues. I had the neurostimulator removed with hopes it would resolve the problem but it did not. I think I was the first patient the doctor used this new device on and he did not have a clue what to do. I have been exposed to a large amount of electricity since the lead was used for over a week. I don’t know who to turn to for help. I am suffering, can’t go to work, can’t get help and will lose insurance soon if I can’t go back to work. Can someone help me please?
I had great success with the trial but the perm implant has been a disaster. My wish was to have a better life after 30 years of severe nerve damage and four lumbar surgeries but it was the biggest mistake of my life. After reviewing the FDA site and other comments I recommend staying away from it. There are just to many problems and horror stories from placement surgery to problems years later. No matter how bad it is today we have to ask ourselves COULD IT BE WORSE? Chances are the answer is yes. Sorry for sounding bitter. I also have PTSD because I felt the doctor cut me open to remove the device. I can’t get past it.
I pretty much had the same story. It is just a stronger TENS unit, and it could not fool my brain into saying this vibration is covering my pain. After over a year had to have it removed – no fun, bec that made my 5th surgery in those areas. If your pain is strong there is no way it can help, but since I had bad effects to some 40 odd pain meds , and therefore cannot take any meds for my 7 to 9 pain it was hard not to try something.
Liked by salena54, Gail, Alumna Mentor, jlfisher56
Hi @goldielocks, and welcome to Connect. I moved you initial post into this thread about neurostimulators. I’m hoping that you’ll be able to talk with the members here, who are also going through a similar experience. @ladyjane85, @zjandre and @pamperthyself – thanks for welcoming @goldielocks into this discussion.
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