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zjandre
@zjandre

Posts: 10
Joined: Apr 05, 2016

Has anybody had an implantable neurostimulator for chronic pain?

Posted by @zjandre, Apr 13, 2016

Has anybody had an implantable neurostimulator for chronic pain?

Liked by grandmaR, bekie

REPLY

@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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@ayankeeinnm

Hi Michael. I would recommend going ahead with the trial. It's minimally invasive, and will tell you within a week if the stimulator is the right thing for you. I had a spinal cord stimulator implant last year in June. The trial was amazing! I had been in so much pain. I had 80% or better, reduction in pain. It was hard to wait for the permanent implant. I have idiopathic peripheral neuropathy pain in my feet, a progressive disease, and my generator is set at the maximum level. If I want to go to the next level, I would begin feeling the vibration, and I want to avoid that, so I'm going to try to treat any new pain with medication.

I have the Burst DR stimulator, and give it high reviews. Using the DR technology, you don't feel the vibration like others do.

I'll be interested to hear what you decide, and if you opt to have the Burst implant, how much it helps. My understanding is that the stimulator was originally designed to treat back pain.

Is the stenosis affecting your sciatic nerve? My wife has stenosis, and is having surgery on the 23rd to enlarge the spinal canal so it's not squeezing her sciatic nerve. She's in a lot of pain, but the surgeon is very optimistic about the benefit.

Jim

@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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Thanks, Jim.  You always seem to give good advice.  I'm having new MRIs and seeing a well reputed neurosurgeon in May about doing a procedure to relieve the stenosis pain.  I'll ask him about both procedures.  Both of
the Laser Spine people tuned me down last year because there was too much damage.  Opiodes work fairly well, but who knows the future of opiodes.  ml

@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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@ayankeeinnm

I've tried so many medications. Every neuropathy med and a bunch of others that doctors thought they'd give a try. The only one that helped was Lyrica, but the side effects put me in the hospital. Morphine sulfate contin is the one that takes off the edge some of the time, but I need to have a higher dosage to keep up with the progressing neuropathy pain. I'm down to a low dose of 15mg three times a day, and I know it's not enough. I hope my doctor will agree to raise it when I see him on Friday.

I hope your neurosurgeon will have good news for you.

Jim

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.

@scruffy1

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.

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So glad that the stimulator is working for you. I had one implanted in 2013 and removed in 2016 because it wasn't doing me any good. They have been improved since I had it. All people are not the same, what works for one doesn't mean it will work for all. I envy you. I am considering the drug Delivery Pump. So far nothing has worked. You give encouragement to others.

Nevro's high frequency stimulator has worked for 5 people I know; maybe you should do the week's trial with that. Also, there are now 7 companies in the market that make them. The technology has improved quite a bit. Best of luck for whatever you do!.

I know that they have improved the pain stimulators so much. I went to a seminar this past week on the stimulator and the Drug Delivery Therapy Pump. My friend is considering the stimulator and I am considering the drug delivery therapy pump. I wish my friend could talk to you about your success. It might help her.. I wish I knew someone who had the drug therapy pump.

I'd be more than happy to have her contact me in any manner.

Mmm im new here. Im supposed to get a boston scientific implanted. Thorasic nerve pain. I dont know the frequency. Should i know this and b more educated? I am scared

I had a nerve stimulator implanted on a trial basis two years ago. Nobody knows the frequency until you try it and see what works for you. Please ask lots of questions and get more information before you do anything. Ask if they do a trial implant to see if it will indeed work for you before committing to a permanent one.
After trying this I discovered it didn’t work well enough for me and doctor advised against the permanent implant.
Best of luck to you. Wishing for good results.

Yes, you should know more! The low frequency stimulators like Boston Sci. don't need to be charged often but I was told I would always feel a tingling. With a high-frequency one, like Nevro, you have to charge it every day or two but you feel nothing. The newest one that was approved in Jan. '18 is smaller than what I have. There are 6 or 7 makers of this type of equipment. You should be making an educated decision. PLEASE review the websites of them all and talk to people that don't have a stake in what you're buying. You also need to know about who's doing the implant and if it's leads or paddles. Paddles require a laminectomy, more painful and longer recoup. time. Also, I was told that, with leads, you can have an MRI but not with paddles. In fact, I'm having one on Monday. I'm no expert so do your homework!

@bonnieh218

I had a nerve stimulator implanted on a trial basis two years ago. Nobody knows the frequency until you try it and see what works for you. Please ask lots of questions and get more information before you do anything. Ask if they do a trial implant to see if it will indeed work for you before committing to a permanent one.
After trying this I discovered it didn’t work well enough for me and doctor advised against the permanent implant.
Best of luck to you. Wishing for good results.

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So how ru now? Has anything helped ?

@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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The low frequency stimulators will shock you if you get into a bad position. Nevro claims that theirs doesn't shock. I had something happen once and thought it was a shock but they said it was a spasm. Never happened again, so who knows. I have one friend who has a Nevro and it hasn't helped him, he doesn't think,but he can't distinguish the muscle pain from the neurological pain. Frankly, until you do the test, you'll never know. They told me it would be a "home run" for my foot neuropathy and maybe for my hip but NOT for my back. Turns out it was 100% for my back and zero for anything else. BUT, it gave me such relief for the back, I can live with the others until I/they figure out what's causing it. It's not voodoo, but it's not predictable.

I have a Medtronic with paddle leads since 2015. I should have asked more questions about the procedure and what would happen if I changed my mind after I had the permanent placed. I assumed it would be flexible wire leads and it wasn't so when I went in for my trial, I had to have another laminectomy while I was awake so that they could put in my paddle leads. I then went home the same day and returned 3 days later. If I wanted the permanent, then they would put me to sleep and implant the rest. If I didn't want it, then they would put me to sleep and take out the paddles. I didn't have to wait or go through all that surgery over again but I could have done without another laminectomy since it was only a few months after my first one. It did help my pain for about half my nerve pain in my leg but did nothing for my back pain that is getting worse every day. I thought it was for both but it wasn't. I have a regular stim not the hf kind so it is a bit too intense sometimes with the buzzing. I wish I had waited since my nerve pain became manageable over time and my surgeon says he will not take my paddles out since it was small inside my spinal canal so I have to keep it even though I don't use it much anymore. Also, if you get paddle leads, you can't have an MRI even to the head. I wasn't told that before hand. Good luck hope that helps answer some questions.

@scruffy1

Yes, you should know more! The low frequency stimulators like Boston Sci. don't need to be charged often but I was told I would always feel a tingling. With a high-frequency one, like Nevro, you have to charge it every day or two but you feel nothing. The newest one that was approved in Jan. '18 is smaller than what I have. There are 6 or 7 makers of this type of equipment. You should be making an educated decision. PLEASE review the websites of them all and talk to people that don't have a stake in what you're buying. You also need to know about who's doing the implant and if it's leads or paddles. Paddles require a laminectomy, more painful and longer recoup. time. Also, I was told that, with leads, you can have an MRI but not with paddles. In fact, I'm having one on Monday. I'm no expert so do your homework!

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Today, I went 90 miles to Savannah to get see an expert in imagining for people who have implanted devices. It was 100% successful. In fact, I had to sign an agreement that I will get a post-MRI impedance test (takes about 2 minutes) to compare with the pre-MRI one. This is for a hip problem that steroid injections won't help nor PRP, and x-rays and CT-Scan can't diagnose. I hope to get a definitive diagnosis and get it fixed so I can get on with an active life. Consider how important an MRI is to diagnose problems before you make a decision on how your implant's leads are done.

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