Peripheral nerve stimulators

Posted by sparshall @sparshall, Tue, Jan 14 9:54pm

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.

Liked by HankB

@jesfactsmon

By the way, hope you are doing well and are still on track for the July 9th DRG procedure. Also hope you are doing okay considering you had a lot of relief during the trial and are now back in Painville for a while. Best, Hank

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@jesfactsmon Hi Hank, Still on for DRG implant on July 9. Wish it was tomorrow. I am like a human pain machine. Got pissed and went shopping in spite of the pain. Walked around the block a few times. At least I seem to be recovering from the trial! How is Linda? How are you? Bye for now, Lori

Liked by HankB

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@billielynne

Sorry to hear of your experience. I now just use morphine to control the pain, plus, i use arthritis strength tylenol with caffeine and aspirin. Sometimes, I'm entirely free from pain and sometimes an ache. The drs tell me the pain is coming from my back, not where it hurts, it sure is hard to see that. Sometimes I want to cut my leg off. Before morphine, when I went to dr, I was in insufferable pain. I wanted to die and told him that if I had to live with that the rest of my life that I wanted to end it and even tho I'm a christian, I couldn't help it. I told him that if his wife were in the same pain that I was in, that he would give her something to ease the pain. Before that, I had Salon Pas patches up and down my leg where it helped the most and slept with an oversized heating pad laying down my leg. I'm hoping that I'm a candidate for spinal fusion and that it takes the pain away eventually. I don't mind a little pain but what I was going thru was horrible. Good luck finding something.

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I forgot to introduce myself to the group . My name is Alan and Im from Vancouver BC. I am 60 yrs old and have been suffering ever since 2011. I had a very active and rewarding job , was athletic , had a very happy marriage , was outgoing and had a very active social life. Of those , only the marriage remains . I am very fortunate for when adversity strikes, your family and a one or 2 good friends are all that matters. Mine is a classic chronic pain saga that I’m sure you are all familiar with. I am hoping to engage with this group to share support and encouragement in addition to sharing information.
Now to reply to you, Yes I’m on high dose opioids too . When my DRG was working I weaned off them …it was so good being off them . It’s like your personality comes back and all the side effects go away . But here I am 5 years later on max dose plus oxcarb and lyrica and having a very rough go of it. I too would have an amputation in a minute if it would solve anything , but alas , not. Really hoping a PNS device will give me a little boost .
So I can relate totally to your feelings of despair , as I share them .
Alan

Liked by rwinney

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@lorirenee1

@jesfactsmon Hi Hank, Still on for DRG implant on July 9. Wish it was tomorrow. I am like a human pain machine. Got pissed and went shopping in spite of the pain. Walked around the block a few times. At least I seem to be recovering from the trial! How is Linda? How are you? Bye for now, Lori

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Hang in there, kid! Just think, this may give you some or a lot of your life back. Can you imagine? Whoa, that is going to be great! We are both in your corner rooting madly. Hank

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@jesfactsmon

Hang in there, kid! Just think, this may give you some or a lot of your life back. Can you imagine? Whoa, that is going to be great! We are both in your corner rooting madly. Hank

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@jesfactsmon AWWWWWW, just thanks, from the bottom of my heart!!!! Do not forget, Hank, that the ABBOTT rep would gladly sit down with Linda and teach her to use the foot ipads AHEAD OF TIME. Please, tell Linda that it is easy. Like pushing a door bell. Seriously. Please do not let her techno phobia get in the way. It is barely technology that she will do. Just simple button pushing. God in heaven, it would be criminal if this stopped her!!!! I will keep you posted. July 9th cannot come soon enough. Pain amped up all over again. Love to you and Linda. Such sweet friends. My silver lining among my clouds…… Lori

Liked by HankB

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@jesfactsmon

Lori sorry if you already said this before but I am wondering, is there a brand name attached to your drg stimulator? There seem to be several I have heard in conjunction with these peripheral nerve stimulators, like the Nalu that @fredjan2016 is having put in as well as the two others Stimwave and Stimrouter (and maybe others?) but as far as the SCS (spinal cord stimulator) and the drg I do not remember hearing a brand name. The reason I ask is that is a good way to track down reviews or other's previous experiences with something. Hank

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@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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@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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@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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@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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@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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@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

@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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@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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@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.

Liked by rwinney, HankB

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@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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@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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