Has anybody had an implantable neurostimulator for chronic pain?

Posted by zjandre @zjandre, Apr 13, 2016

Has anybody had an implantable neurostimulator for chronic pain?

Liked by bekie, grandmaR

@12165008021954

Anyone out there had a spinal cord stimulator implanted for brachial plexus avulsion pain

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Gary and Shiela

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My husband had brachial plexus reconstruction surgery at Mayo Clinic, the Brachial Plexus team said they have done all they can do as far as repair but he has so much pain. He would like to try the Spinal Cord Stimulation Trial and is just wondering if it has worked for anyone with this injury.

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It didn't work for me, I didn't pass the test when they tried it out. The other alternative is the pain pump. This works well for me.

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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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Hello. My name is Michael. I have been following this thread for about a year. I have spinal stenosis. Pain is total back – CTL. Most pain is upper and lower back. Worst pain is in shoulders. Doctor keeps pushing the St. Jude's burst stimulator. Almost all the posts about the stimulator have been negative except for a few who were helped with foot pain. The posts have scared me into cancelling my trial until I get new MRIs. Now using opiates and medical marijuana. Would appreciate new thoughts. Thank you all.

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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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Hi Michael,
I went through the trial with a nerve stimulator in October. My doctors concluded that I wasn’t getting as much pain relief as they were hoping. They recommended not going through with the final implant. If I were you I would not cancel your trial. It is a relatively small procedure. Everybody is different as you know. You may discover that YOU ARE THE ONE that it works for!

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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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Hello Michael….welcome. You sound like me…a bit leery. My current situation is the result of too many structural surgeries (13) with multiple joint replacements. I light up the machines in airport security pretty well. I have been using medical marijuana for 2 years now. It does require moving slowly to find a regimen that works for you. Mine is a combination edibles, tinctures, topicals and vaping. The folks in this industry are very compassionate and helpful. Unfortunately…right now all products are going through regulatory review since the law in California opened to recreational this January. And so I have to start over and learn again. I was cautioned not to use alcohol with marijuana. Does that hold true for opioids?

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I have the Nevro Spinal Stimulator and it has really not helped. My trial worked so I was very optimistic. I do understand from my pain doctor at Mayo that this is not the norm tho. Most of these Stimulators are very successful. I have had mine for about 2 years. I will say this, the Nevro people do not give up easy. They keep trying to make it work.

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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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It was suggested to me by my neurologist I was seeing at the time to get a neuro simulator as a last ditch effort to stop my head and neck pain. I have spinal stenosis in my upper cervical. I had tried neck traction, muscle simulator similar to a tens unit, different cervical and nerve blocks, nerve ablation on both sides of my c4 and several different medications and muscle relaxers to stop the pain. None of those things worked and I seriously considered the implant but I decided against it and made an appointment at Mayo. They Started me on botox around my head, neck, and shoulders and I started using a Cefly device. I know that is different from you but is it possible to get botox injections in your upper back? It has worked well for me. I have other pain and issues and one of the meds I use is oxycotin, which is one of the only meds that helps my pain. I don't think med marijuana is legal in my state but after reading some of these posts I begining to wish it was. I do have a friend who after several back surgeries and years of pain has decided to try it. It's such a tough l

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Dais-
I am a 34 year cancer survivor who had a ton of radiation to my head. This has caused scarring on my trigeminal nerve on the right side of my head. In 1995 I had a couple of branches of that nerve cut, which helped the pain for a few months. Then my nervous system found a way to "reroute" that message to my brain that I was still in pain. At that time i was on 300mg of oral morphine and still miserable. In 1998 I found out abouI have t deep brain stimulation and found a neurosurgeon who was doing them for pain in Georgia. After we talked an hour on the phone I went to see him. He decided I was an appropriate candidate and I had it put in in 1999. It did work for me, and cut my pain meds in half (plus my quality of life improved quite a bit because my pain was back under control). I have had it now for 19 years and it still helps with the pain. I think you said you have abandoned the idea of trying one of these. If you ever change your mind, do your research and find a good neurosurgeon who has experience with this surgery. I see Dr. Peter Konrad at Vanderbilt Hospital. He is very good, but he may not be a good geographical choice for you. Once you find a good neurosurgeon you are happy with, talk to them and see if you are an appropriate candidate for a stimulator. I have neuropathic pain from what they call osteoradialneucrosis ( my nerves being damaged so badly and dead bone in my head from all of the radiation I got years ago). Good luck in your search for relief. I do not know what part of the country you are from, but CBD oil and marijuana can be very helpful with chronic pain. Just google "marijuana and chronic pain." There are studies out there that show this, yet it is still considered a schedule 1 drug. Marijuana is illegal here in Alabama so I am out of luck. It is the only thing that has taken away all of my pain, and the pain clinic here where I live says that many patients will not try other medications they offer because the patients don't want to give up using marijuana. CBD oil should be legal in all states because it has very little THC (the ingredient that gets you high) in it. Do some research on the cannabidiol system. Very interesting. I wish you much peace and I hope you get relief soon!!!!

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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?

Jump to this post

Those of us in pain, will try most anything. I have had 3 surgeries, so many injections that I can't remember them all. I had a pain stimulator implanted, that didn't work either. I had it removed in order to have a MRI, it showed that the complete spine was not in very good shape. I have a lot of degeneration, spurs, bulging, compression fractures, from the lumbar, thoracic, to the cervical. Right now it is the thoracic and neck that are bothering me the most. I don't want to give up on finding something other then pain meds.. I hate to take them and then feel spaced out, but what else is there? I am 81 and realize that I am not a spring chicken, but do I have to hurt all the time?

Liked by dais

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@patch

Dais-
I am a 34 year cancer survivor who had a ton of radiation to my head. This has caused scarring on my trigeminal nerve on the right side of my head. In 1995 I had a couple of branches of that nerve cut, which helped the pain for a few months. Then my nervous system found a way to "reroute" that message to my brain that I was still in pain. At that time i was on 300mg of oral morphine and still miserable. In 1998 I found out abouI have t deep brain stimulation and found a neurosurgeon who was doing them for pain in Georgia. After we talked an hour on the phone I went to see him. He decided I was an appropriate candidate and I had it put in in 1999. It did work for me, and cut my pain meds in half (plus my quality of life improved quite a bit because my pain was back under control). I have had it now for 19 years and it still helps with the pain. I think you said you have abandoned the idea of trying one of these. If you ever change your mind, do your research and find a good neurosurgeon who has experience with this surgery. I see Dr. Peter Konrad at Vanderbilt Hospital. He is very good, but he may not be a good geographical choice for you. Once you find a good neurosurgeon you are happy with, talk to them and see if you are an appropriate candidate for a stimulator. I have neuropathic pain from what they call osteoradialneucrosis ( my nerves being damaged so badly and dead bone in my head from all of the radiation I got years ago). Good luck in your search for relief. I do not know what part of the country you are from, but CBD oil and marijuana can be very helpful with chronic pain. Just google "marijuana and chronic pain." There are studies out there that show this, yet it is still considered a schedule 1 drug. Marijuana is illegal here in Alabama so I am out of luck. It is the only thing that has taken away all of my pain, and the pain clinic here where I live says that many patients will not try other medications they offer because the patients don't want to give up using marijuana. CBD oil should be legal in all states because it has very little THC (the ingredient that gets you high) in it. Do some research on the cannabidiol system. Very interesting. I wish you much peace and I hope you get relief soon!!!!

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Thank you for the info. I live in Minnesota and I will do some research. At the time my neurologist told me it would be the same size as the one that goes on the spinal cord and that scared me. I would like to try that oil. I'm scheduled to go to see my Dr in two weeks. I will ask him.

Liked by Jamie Olson

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@goldielocks

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.

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Omg so sorry to hear of all your pain from a neurostimulator our bodies reject anything foreign I'd have it removed right away.I have fibromyalgia ,L2fracture so am I'm pain but being a retired nurse I do herbal @homeopathic medicines plus Magnesium the body needs minerals like mag@calcium.Tramadol for pain ,I'm so sorry for your pain and hives this is a allergy.

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@patch

Dais-
I am a 34 year cancer survivor who had a ton of radiation to my head. This has caused scarring on my trigeminal nerve on the right side of my head. In 1995 I had a couple of branches of that nerve cut, which helped the pain for a few months. Then my nervous system found a way to "reroute" that message to my brain that I was still in pain. At that time i was on 300mg of oral morphine and still miserable. In 1998 I found out abouI have t deep brain stimulation and found a neurosurgeon who was doing them for pain in Georgia. After we talked an hour on the phone I went to see him. He decided I was an appropriate candidate and I had it put in in 1999. It did work for me, and cut my pain meds in half (plus my quality of life improved quite a bit because my pain was back under control). I have had it now for 19 years and it still helps with the pain. I think you said you have abandoned the idea of trying one of these. If you ever change your mind, do your research and find a good neurosurgeon who has experience with this surgery. I see Dr. Peter Konrad at Vanderbilt Hospital. He is very good, but he may not be a good geographical choice for you. Once you find a good neurosurgeon you are happy with, talk to them and see if you are an appropriate candidate for a stimulator. I have neuropathic pain from what they call osteoradialneucrosis ( my nerves being damaged so badly and dead bone in my head from all of the radiation I got years ago). Good luck in your search for relief. I do not know what part of the country you are from, but CBD oil and marijuana can be very helpful with chronic pain. Just google "marijuana and chronic pain." There are studies out there that show this, yet it is still considered a schedule 1 drug. Marijuana is illegal here in Alabama so I am out of luck. It is the only thing that has taken away all of my pain, and the pain clinic here where I live says that many patients will not try other medications they offer because the patients don't want to give up using marijuana. CBD oil should be legal in all states because it has very little THC (the ingredient that gets you high) in it. Do some research on the cannabidiol system. Very interesting. I wish you much peace and I hope you get relief soon!!!!

Jump to this post

I Sent online here and read alot of comments from people who had this nerve stimulator a lot of unhappy people who said it didn't work one said it shocked her body even when turned off ,one said she got hives,rash and thats a allergy ,our bodies don't like foreign objects I am unfamiliar with this device but would think long and hard before I had it put in my body.

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@patch

Dais-
I am a 34 year cancer survivor who had a ton of radiation to my head. This has caused scarring on my trigeminal nerve on the right side of my head. In 1995 I had a couple of branches of that nerve cut, which helped the pain for a few months. Then my nervous system found a way to "reroute" that message to my brain that I was still in pain. At that time i was on 300mg of oral morphine and still miserable. In 1998 I found out abouI have t deep brain stimulation and found a neurosurgeon who was doing them for pain in Georgia. After we talked an hour on the phone I went to see him. He decided I was an appropriate candidate and I had it put in in 1999. It did work for me, and cut my pain meds in half (plus my quality of life improved quite a bit because my pain was back under control). I have had it now for 19 years and it still helps with the pain. I think you said you have abandoned the idea of trying one of these. If you ever change your mind, do your research and find a good neurosurgeon who has experience with this surgery. I see Dr. Peter Konrad at Vanderbilt Hospital. He is very good, but he may not be a good geographical choice for you. Once you find a good neurosurgeon you are happy with, talk to them and see if you are an appropriate candidate for a stimulator. I have neuropathic pain from what they call osteoradialneucrosis ( my nerves being damaged so badly and dead bone in my head from all of the radiation I got years ago). Good luck in your search for relief. I do not know what part of the country you are from, but CBD oil and marijuana can be very helpful with chronic pain. Just google "marijuana and chronic pain." There are studies out there that show this, yet it is still considered a schedule 1 drug. Marijuana is illegal here in Alabama so I am out of luck. It is the only thing that has taken away all of my pain, and the pain clinic here where I live says that many patients will not try other medications they offer because the patients don't want to give up using marijuana. CBD oil should be legal in all states because it has very little THC (the ingredient that gets you high) in it. Do some research on the cannabidiol system. Very interesting. I wish you much peace and I hope you get relief soon!!!!

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I use Arnica Gel it's a run but held alot I love it

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My PT just recommended Arnica for pain rub.

Liked by lioness

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