Implantable neurostimulator for chronic pain

Posted by zjandre @zjandre, Apr 13, 2016

Has anybody had an implantable neurostimulator for chronic pain?

Interested in more discussions like this? Go to the Spine Health group.

No-one should "shame" anyone else.
I'd been getting treated for chronic pain for over 12 years and it was never presented as an option. They only brought up the Stimulators because of the "opiod crisis" and as you said, their fear of the DEA for prescribing it.

I never heard of the pain pump until a friend of mine who was an engineer for 15 years for Medtronic developing the pain pump brought it up.
When I asked my pain clinic they said – "yes, that might be a really good fit for my pain issue". What??!!??!! They could not come up with it themselves? they even implant them daily in their surgery center, but they somehow never even informed me that it was an thing.

The one thing (good and bad) about all these pumps and stimulators is that they are targeted so if you can get them to work on you it is over a limited area. Since my chronic pain is all over my body, I have to pick the area that is worst and basically just suffer with the rest.
Whereas, the oral opiods would treat all of the pain at once.

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Yeah, I really don’t know if a pump would benefit me or not. I like to think it would because I have so much pain on the right side.

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@cbrackle

No-one should "shame" anyone else.
I'd been getting treated for chronic pain for over 12 years and it was never presented as an option. They only brought up the Stimulators because of the "opiod crisis" and as you said, their fear of the DEA for prescribing it.

I never heard of the pain pump until a friend of mine who was an engineer for 15 years for Medtronic developing the pain pump brought it up.
When I asked my pain clinic they said – "yes, that might be a really good fit for my pain issue". What??!!??!! They could not come up with it themselves? they even implant them daily in their surgery center, but they somehow never even informed me that it was an thing.

The one thing (good and bad) about all these pumps and stimulators is that they are targeted so if you can get them to work on you it is over a limited area. Since my chronic pain is all over my body, I have to pick the area that is worst and basically just suffer with the rest.
Whereas, the oral opiods would treat all of the pain at once.

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I had a similar situation. Pain MD (neurologist by specialty) never suggested one and once neurosurgeon proposed I have more surgery, it was like she just gave up on other options. If I hadn’t sought out a second opinion, I would not have even thought about a SCS! I have since learned a pain management MD whose specialty is Anesthesiology has a much broader concept of what to try for pain management options. Something to keep in mind!

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I wish I had better access to Pain Specialist. Wyoming is so limited. Many have left the state with most if not all not taking new patients on opioids (my only form of effective pain treatment after 3 years of trial and experimentation with every other option in the arsenal.

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@faithwalker007

I wish I had better access to Pain Specialist. Wyoming is so limited. Many have left the state with most if not all not taking new patients on opioids (my only form of effective pain treatment after 3 years of trial and experimentation with every other option in the arsenal.

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@faithwalker007 not having an accessible pain clinic for every person should be illegal. I am so sorry!

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@faithwalker007

I wish I had better access to Pain Specialist. Wyoming is so limited. Many have left the state with most if not all not taking new patients on opioids (my only form of effective pain treatment after 3 years of trial and experimentation with every other option in the arsenal.

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The bonus of the pain pump is they fill it with Dilaudid which for me was the only effective treatment found over years of trial and error (at my expense).

Another thing to consider is getting some genetic testing done.
I had it done after many years of Tyrol and error. Really enlightening that the stuff they said to avoid was the stuff we found had not worked.

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@zjandre

I am considering one for more than 15 years of chronic neck pain. Tried every other thing imaginable.

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Hi, did you try the SCS (spinal cord stimulator) for your neck pain ?

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@lisab62

I’ve had the Spinal Cord Stimulator for pain of Variant Angina
It has taken care of the pain however it does not cover the pain of a heart attack or a bad spasm. Took a little while to
Get used to it but now it’s part of my life and totally worth it.

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Glad to hear you had some success with a SCS. Which company of the SCS did you use? i.e, Boston Scientific, Abbot, Nevro. etc.

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@goldielocks

I continue to suffer with severe nerve pain from my buttocks to my toes. I can’t tolerate sitting, standing or anything inbetween. The calf muscles continue to move all the time and they hurt. I was told that this stimulator should have never been suggested since I already had previous nerve damage. Apparently my body is hypersensitive and nothing can be done. The nerves need time to recover and that can take up to two years if they recover at all. I am sensitive to medications and there is not one that I can take to help. I was also told that the stimulator can help patients during the trial, because its like a party for your nerves feeling relief that they have not felt for so long but when the perm implant is put in you never get the same response. One thing to keep in mind is that the trial is always done with the lead wire but your doctor might suggest the paddle. I believe my outcome would have been successful had they used the paddle. My life has changed forever. I live alone. I cannot go back to work. I really don’t know what will happen to me now. No way to support myself, no one to help. I am in pain 24 hours a day. I cannot do anything that I did before the stimulator. It was suggested that I go to the Mayo chronic pain center to help me learn ways to live with this pain but I do not have the money to stay in the hotel for three weeks, pay for the program as insurance does not cover all of it and other living expense for the three week long program. It would be nice if Mayo had an indigent care program in place to help patients that would benefit from the treatment center but cannot afford it. I still wonder how can devices like these be approved if there is no way to help the patient if the procedure fails. Shame on the FDC for approving this kind of treatment with so little testing. Shame on the companies that sit and watch their stock increase, NEVRO. Shame on the doctors that continue to play GOD, knowing the damage that they have caused patients should prevent them from doing the procedure on other patients. Nerve pain is so terrible that we will try anything to find relief. Maybe patients should be informed with all facts before jumping into anything a doctor suggests will provide relief. Search a little harder, look at more studies that have been done, listen to other complaints. I know I have to live minute to minute. What kind of life is worth living with this kind of pain? I do want to wish those of you starting out on your new journey the best of luck.

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I had severe pain in the toes of my right foot from nerve damage from 2 surgeries. One in 2016 and the other in 2018. I They claimed I got 50% relief from the Boston Scientific (Medtronic) device about 18 months ago. I then had the permanent one implanted. I Only got about 25% relief and I didn't like the parathesia so I had it removed 2 months later.
I had since came down with a pretty severe back pain, I was told by the Dr. That he can target bother area's , back and foot. Tomorrow, I'm going to have another pain doctor try a 5 day trial with the SCS made by Abbott, formerly, St. Jude. I have personally talked to 3 prior patients. Two who had severe foot pain and one leg pain. All three got significant relief with the Abbott device and they all highly recommend I try it. There is no parathesia with Abbott and you don't have to recharge the battery. I am told by the rep that the battery is guaranteed for 5 years and some if on the low setting can last up to 10 years before needing replacement. I am 74 years old. I'm praying for a successful trial.

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@alysebrunella

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 have considered it for over a year. My dr. feels I would be a good candidate. My daughters do NOT want me to have this procedure

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I have the stimulater it does a lot for my pain have pain in feet legs and back nerve damage in both legs but the stimulater is a. Lot of work you have to charge it with battery in back which takes much time and I hate doing it because I have to sit in place or the belt moves of battery but it is a good tool to have surgery was easy it worth looking into

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