Implantable neurostimulator for chronic pain

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!!!!

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.

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!!!!

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!!!!

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?

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?

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?

In August 2017, I had a Nevro neurostimulator implanted in my back above the beltline because I had chronic, sometimes debilitating back pain for almost 30 years. In the mornings, I walked like I was somewhere in the middle of the evolutionary chart. I needed heat every morning and ice during the other parts of, the day as well as opioids. Coupled with chiropractic care to keep the last 5 bones in my back in alignment, I have ZERO pain. I charge the battery by induction and it takes about 20-30 minutes a day, usually while watching the TV or reading. Two months after the implant surgery I went on a golf trip with friends and played 3-18-hole rounds in 3 days, and I was pain free. I am due for an MRI (not for my back) on Monday and have been cleared to get one.