1. < Neuropathy

Peripheral nerve stimulators

Posted by sparshall @sparshall, Jan 14, 2020

This is a long shot, but I’m looking for people who have used implanted peripheral nerve stimulators (PNS) to control nerve pain. They block the pain signal to the brain. Stimrouter and Stimwave are major brands. These are NOT the same thing as spinal cord stimulators, of which there are many brands. I’m about to have a Stimwave implanted to block intractable pelvic and leg nerve pain.

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Hank | @jesfactsmon | Jul 2, 2020
In reply to @lorirenee1 "@jesfactsmon Hi Hank, I think my DRG is the Axion by ABBOTT. It has the longest..." + (show)
@lorirenee1

@jesfactsmon Hi Hank, I think my DRG is the Axion by ABBOTT. It has the longest battery life. I am getting scared because I just read here about a man @alh123 Alan, who's DRG just stopped being effective. God in heaven. But I don't know what else to do. Nothing is perfect, for sure. But his lost effectiveness after 7 months. It takes a few months to even heal. I don't know. I just don't know. I have to go through with this, I have to at least try. Just sad and scared today.......Lori

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C'mon Lori, buck up! You know you have to move ahead on this Because you are doing your very best to do what is right FOR YOU. The results are not in your hands, you just have to take the plunge. Anyone in your shoes would be worried of course. That is why you leave it in God's hands and accept the result that he has in mind for you. Don't fret. You are going to be fine. Linda and I will toast your success next Thursday (just one week!). Hank

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1 reply
lorirenee1 | @lorirenee1 | Jul 2, 2020

@jesfactsmon Aww Hank, thanks so much. I think I am just getting scared with surgery so close. Of course, I will do it. God is on my side with this. I can feel it. Please send love to Linda. Love, Lori

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Mentor
Rachel, Volunteer Mentor | @rwinney | Jul 2, 2020
In reply to @jesfactsmon "C'mon Lori, buck up! You know you have to move ahead on this Because you are..." + (show)
@jesfactsmon

C'mon Lori, buck up! You know you have to move ahead on this Because you are doing your very best to do what is right FOR YOU. The results are not in your hands, you just have to take the plunge. Anyone in your shoes would be worried of course. That is why you leave it in God's hands and accept the result that he has in mind for you. Don't fret. You are going to be fine. Linda and I will toast your success next Thursday (just one week!). Hank

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@lorirenee1 Exactly what Hank said! I have no doubt in my mind that this is your next step. Nothing ventured, nothing gained Lori. You've come this far and I can appreciate your fear because after all, you are human. I'm having a pissy day too so, right there with you but, together, we're here to hold each other up, encourage and support. My thoughts are with you.

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alh123 | @alh123 | Jul 2, 2020
In reply to @lorirenee1 "@jesfactsmon Hi Hank, I think my DRG is the Axion by ABBOTT. It has the longest..." + (show)
@lorirenee1

@jesfactsmon Hi Hank, I think my DRG is the Axion by ABBOTT. It has the longest battery life. I am getting scared because I just read here about a man @alh123 Alan, who's DRG just stopped being effective. God in heaven. But I don't know what else to do. Nothing is perfect, for sure. But his lost effectiveness after 7 months. It takes a few months to even heal. I don't know. I just don't know. I have to go through with this, I have to at least try. Just sad and scared today.......Lori

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I feel for your situation..these decisions are hard . My axium was great when it was working ..well worth it esp if it had lasted ..it would have been fantastic. So , worth it to try . My whole journey has been marked by this kind of thing . Studies show 70% or so people get good relief ..some drop out like me but a lot don’t and their life is really helped . New programming in the device means lots more options in the type of signal used , so can try lots more options than mine from 2015 . So don’t use my example to put you off ..I would do same again and I paid out of my own pocket ! Good luck I’m sending positive vibes your way,
Alan

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lorirenee1 | @lorirenee1 | Jul 3, 2020

@alh123 @rwinney @jesfactsmon Guys, thanks for all your encouragement going thru with my DRG surgery. Alan, thankyou for broadening my perspective about it. I wish it had worked longer for you. It is unimaginable to get such relief, and have it leave. Our brains are so mysterious in how they change and react to things. I hope you guys are having a decent day today. I just woke up, and my brain does not know it's attached to my feet yet, so I should be without pain for at least 10 minutes. Is this nuts, or what? But it seems as I awaken, the pain awakens. Maybe I should just stay asleep all day. A good pain management system! Why I even manage to sleep is beyond me, but I do. I stopped trying to figure things out. Neuropathy and the nervous system are way too complex. Love to you folks. I do not know what I would do without you!!!!! Lori

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2 replies
Mentor
Jim, Volunteer Mentor | @jimhd | Jul 3, 2020
In reply to @lorirenee1 "@alh123 @rwinney @jesfactsmon Guys, thanks for all your encouragement going thru with my DRG surgery. Alan,..." + (show)
@lorirenee1

@alh123 @rwinney @jesfactsmon Guys, thanks for all your encouragement going thru with my DRG surgery. Alan, thankyou for broadening my perspective about it. I wish it had worked longer for you. It is unimaginable to get such relief, and have it leave. Our brains are so mysterious in how they change and react to things. I hope you guys are having a decent day today. I just woke up, and my brain does not know it's attached to my feet yet, so I should be without pain for at least 10 minutes. Is this nuts, or what? But it seems as I awaken, the pain awakens. Maybe I should just stay asleep all day. A good pain management system! Why I even manage to sleep is beyond me, but I do. I stopped trying to figure things out. Neuropathy and the nervous system are way too complex. Love to you folks. I do not know what I would do without you!!!!! Lori

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@lorirenee1

My SCS from Abbott gave me 2 years of relief. Certainly I wish it had lasted a lot longer, but it was great while it lasted. As Alan @alh123 said, it works much longer for many people. I'm one of those people who find help, only to have it go away.

Only a week to go, Lori. So close. Maybe you should avoid reading any more reviews.

Jim

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1 reply
lorirenee1 | @lorirenee1 | Jul 3, 2020
In reply to @jimhd "@lorirenee1 My SCS from Abbott gave me 2 years of relief. Certainly I wish it had..." + (show)
@jimhd

@lorirenee1

My SCS from Abbott gave me 2 years of relief. Certainly I wish it had lasted a lot longer, but it was great while it lasted. As Alan @alh123 said, it works much longer for many people. I'm one of those people who find help, only to have it go away.

Only a week to go, Lori. So close. Maybe you should avoid reading any more reviews.

Jim

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@jimhd Hi Jim, They sure don't tell you that these machines can work, and then stop working! To not be less pain, if only for a year, would make it worth it. You are right about maybe not reading reviews, but I have trouble staying away. I always want to know how everyone is doing!!! What is going on with you and your possible surgery? Thanks for writing! So appreciated! Lori

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fredjan2016 | @fredjan2016 | Jul 8, 2020
In reply to @jesfactsmon "@fredjan2016 Hi Fred, you mentioned on June 14th that your permanent install of the Nalu stimulator..." + (show)
@jesfactsmon

@fredjan2016 Hi Fred, you mentioned on June 14th that your permanent install of the Nalu stimulator was "later in May" but I think you might have meant later in June? Just trying to keep track of this as my wife and I are curious as to how well it works for you after you have it put in. Hope all is well. I hope the wait is not too crazy-making for you, I bet you'll be glad to have this done. When you had the trial you had said that the main benefit was that you could walk more easily but that you still had the burning in your feet. Did you get any reduction in your pain level? Just curious. Look forward to hearing how you do. Best, Hank

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@jesfactsmon They installed the device on June 29th. I have to wait two weeks for the places on legs to heal before sticking the device pod on my calves. The device pods stick to my legs like tape and only last for a few days. That way you can clean the spot underneath the device pods. So, I have another week before they turn the devices on.

The forgot to tell me that after the surgery my legs would hurt a lot for the next three days. I had to use my chronic pain medication since they didn't prescribe me any acute pain medicine.

Strange thing happened. They woke me up during the surgery to ask me questions about my left leg. Then they said "put him back out" and back to sleep I went. Never had that happen before.

Hopefully, late next week I can provide a more useful update.

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3 replies
Hank | @jesfactsmon | Jul 8, 2020
In reply to @fredjan2016 "@jesfactsmon They installed the device on June 29th. I have to wait two weeks for the..." + (show)
@fredjan2016

@jesfactsmon They installed the device on June 29th. I have to wait two weeks for the places on legs to heal before sticking the device pod on my calves. The device pods stick to my legs like tape and only last for a few days. That way you can clean the spot underneath the device pods. So, I have another week before they turn the devices on.

The forgot to tell me that after the surgery my legs would hurt a lot for the next three days. I had to use my chronic pain medication since they didn't prescribe me any acute pain medicine.

Strange thing happened. They woke me up during the surgery to ask me questions about my left leg. Then they said "put him back out" and back to sleep I went. Never had that happen before.

Hopefully, late next week I can provide a more useful update.

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Fred thanks for the update, I was wondering how things were going for you. Got my fingers crossed for you that it works after they turn it on and you start to get some welcome relief. Your comment is very troubling that they "forgot" to tell you about the pain you would experience after the operation and did not prescribe any pain meds or even discuss this with you. I would suggest that you proactively discuss this fact with the doctor, it sounds like a big communication breakdown on their part. Wishing you well my friend, Hank

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Mentor
Rachel, Volunteer Mentor | @rwinney | Jul 8, 2020
In reply to @fredjan2016 "@jesfactsmon They installed the device on June 29th. I have to wait two weeks for the..." + (show)
@fredjan2016

@jesfactsmon They installed the device on June 29th. I have to wait two weeks for the places on legs to heal before sticking the device pod on my calves. The device pods stick to my legs like tape and only last for a few days. That way you can clean the spot underneath the device pods. So, I have another week before they turn the devices on.

The forgot to tell me that after the surgery my legs would hurt a lot for the next three days. I had to use my chronic pain medication since they didn't prescribe me any acute pain medicine.

Strange thing happened. They woke me up during the surgery to ask me questions about my left leg. Then they said "put him back out" and back to sleep I went. Never had that happen before.

Hopefully, late next week I can provide a more useful update.

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@fredjan2016 Wishing you a positive outcome Fred. Best of luck . Rachel

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