1. < Neuropathy

Newest Comments about my DRG stimulator, implanted 5 months ago

Posted by lorirenee1 @lorirenee1, Dec 5, 2020

Hi, it's LoriRenee1. I thought I would do a final post about my DRG implant, in hopes of helping someone decide if they want a stimulator. It's been five months since my implant, and all in all, it barely helps my feet. I have both high and moderate amounts of pain still. I would say more moderate since the DRG, for the most part. This past month there has been an addition of electric type pain. I get a buzzing, zapping, tingling, sensation from anywhere waist down, but particularly in my glutes and shins. It is beyond annoying. It is painful and alien feeling. During the last month or so, I can't sit down easily, as my butt has electrical sensations that hurt. Today, I finally turned off the machine, and I will see how my feet feel without it. I could not bare it any more. So wish me luck folks. I hope my foot pain does not get more severe without it. If you have any questions, please ask. I will help you as much as I can. LoriRenee1

Interested in more discussions like this? Go to the Neuropathy Support Group.

sunnyflower | @sunnyflower | Dec 7, 2020
In reply to @jesfactsmon "@lorirenee1 Lori, at this point, having followed your journey all the way through, about all I..." + (show)
@jesfactsmon

@lorirenee1
Lori, at this point, having followed your journey all the way through, about all I can say is Ugh! No one I have heard about had higher hopes for one of these things to work, put in more effort to finally get the darn thing installed (while working around all the covid obstacles), and struggled more than you with the doctors and the reps to try to successfully get it to reduce your pain. You are a testament to what it means to strive for something. I have been inspired by your commitment and dedication to having this done so it can help you to have a better life. Some of us humans, ones like you anyway, will go to amazing lengths to try to get out from under, and move beyond, challenges and difficulties you are faced with. I know you are beyond discouraged, as am I for you, but, as a person of Faith as I know you are, I hope you know that whatever struggles we have in life are never a waste. God sees your efforts and struggles. He will not forget them.

You ARE an inspiration! I know that in itself does nothing for your suffering, but your service to others through giving out this info and allowing others to follow your journey, is a very good thing that you do. I appreciate you. Hank

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Ditto! @lorirenee1

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lweave2 | @lweave2 | Dec 8, 2020

Lori, You are an amazing trooper. You can't say you haven't tried. Keep buggering on. 😊

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1 reply
sunnyflower | @sunnyflower | Dec 8, 2020
In reply to @lorirenee1 "@sunnyflower Hi Sunny! All prayers you can muster are very welcome! Thanks for your kindness and..." + (show)
@lorirenee1

@sunnyflower Hi Sunny! All prayers you can muster are very welcome! Thanks for your kindness and support! Lori

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You've got it!! Pretty bad? 🙏❤️🤗🌹

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sunnyflower | @sunnyflower | Dec 8, 2020
In reply to @lorirenee1 "@jesfactsmon Hi Hank, I know for sure, that the very best part of my journey, has..." + (show)
@lorirenee1

@jesfactsmon Hi Hank, I know for sure, that the very best part of my journey, has been meeting YOU!!!! Through everything I have endured, you have been there for me! Believe me, Hank, you too are inspirational as you fight for your wife and everyone on here! You manage to help everyone! You are such a listener and a keeper of each of our journeys! So yes, the DRG is officially off for awhile. Perhaps it will go back on, but I could no longer even sit down with comfort. God willing, whatever was going on, will settle down now. Please do a prayer, as it ain't over, till I can sit down comfortably! Thanks for everything, Hank. Love, Lori

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Ditto!!! Both of you keep me going! I am beyond blessed to know you both!! Thank you so much for your support and encouragement! 🤗

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lorirenee1 | @lorirenee1 | Dec 8, 2020
In reply to @lweave2 "Lori, You are an amazing trooper. You can't say you haven't tried. Keep buggering on. 😊" + (show)
@lweave2

Lori, You are an amazing trooper. You can't say you haven't tried. Keep buggering on. 😊

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@lweave Sometimes you have nothing you can do in life, but be a trooper! Ya gotta try! And I tried so hard! Lori

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2 replies
lweave2 | @lweave2 | Dec 9, 2020
In reply to @lorirenee1 "@lweave Sometimes you have nothing you can do in life, but be a trooper! Ya gotta..." + (show)
@lorirenee1

@lweave Sometimes you have nothing you can do in life, but be a trooper! Ya gotta try! And I tried so hard! Lori

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No doubt about that. You are giving it all you've got. You never know what might be around the corner.

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Mentor
Jim, Volunteer Mentor | @jimhd | Dec 10, 2020

@lorirenee1 I know from my own experience with the scs how difficult (my phone suggested "distressing") it is to deal with the ups and downs. My stimulator seemed to be doing nothing for the past year, but after a spinal cord decompression surgery, I met again with the rep.

Unfortunately, I made 3 changes at about that same time - scs adjusted, increased mscontin from 15mg tid to 30mg bid, and started taking Cymbalta for neuropathy. My feet have been hurting noticeably less since then, and because I wasn't sure if the stimulator was contributing, I turned it off for a week. I now know that it's helping. Pain level range went down from 5-8 to 3-6!!! Hallelujah! I think that each of the 3 changes is doing its share. And Cymbalta has lifted my energy level, so that I'm doing a list of things that have needed to be done for several years. I'm much more productive. And my wife is liking it, too.

The surgery for severe spinal stenosis may have released the pressure on the nerves going to my feet, and at the same time made it possible for the stimulator to do its job. I don't know how long it will last, but even a little bit less pain is a welcome relief.

I've been avoiding Connect for a few weeks because, even though I'm more productive, depression slithers around in my mind. With the addition of Cymbalta, I think that depression is more hidden, but with just a simple thought, I feel it in my core. Remembering a traumatic event, or just hearing a word or two triggers a stirring up of emotions. One sign of depression for me has been the inability to focus on something like filling out a monthly report. But I saved your message that started this thread so I could read what you wrote about your progress with the drg. I'm very sorry that it hasn't been doing what you hoped it would. Big disappointment. We share in your disappointment. I think that part of the human experience is being disappointed, and finding ways to get back up and move forward. We're all different in how that works itself through. I'm one who takes longer to get going again. It's not a character defect. It's just the way I'm wired. I guess I need time to process what just happened before I can even think about moving forward. It's kind of like grief. Each of us goes through that process in our own way and at our own speed. Be encouraged knowing that it's OK to set your own pace.

As usual, once I get started with a short note, it mushrooms into a novel. Just wanted you to know I join others in praying for you in our daily prayers.

Jim

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2 replies
lorirenee1 | @lorirenee1 | Dec 10, 2020
In reply to @jimhd "@lorirenee1 I know from my own experience with the scs how difficult (my phone suggested "distressing")..." + (show)
@jimhd

@lorirenee1 I know from my own experience with the scs how difficult (my phone suggested "distressing") it is to deal with the ups and downs. My stimulator seemed to be doing nothing for the past year, but after a spinal cord decompression surgery, I met again with the rep.

Unfortunately, I made 3 changes at about that same time - scs adjusted, increased mscontin from 15mg tid to 30mg bid, and started taking Cymbalta for neuropathy. My feet have been hurting noticeably less since then, and because I wasn't sure if the stimulator was contributing, I turned it off for a week. I now know that it's helping. Pain level range went down from 5-8 to 3-6!!! Hallelujah! I think that each of the 3 changes is doing its share. And Cymbalta has lifted my energy level, so that I'm doing a list of things that have needed to be done for several years. I'm much more productive. And my wife is liking it, too.

The surgery for severe spinal stenosis may have released the pressure on the nerves going to my feet, and at the same time made it possible for the stimulator to do its job. I don't know how long it will last, but even a little bit less pain is a welcome relief.

I've been avoiding Connect for a few weeks because, even though I'm more productive, depression slithers around in my mind. With the addition of Cymbalta, I think that depression is more hidden, but with just a simple thought, I feel it in my core. Remembering a traumatic event, or just hearing a word or two triggers a stirring up of emotions. One sign of depression for me has been the inability to focus on something like filling out a monthly report. But I saved your message that started this thread so I could read what you wrote about your progress with the drg. I'm very sorry that it hasn't been doing what you hoped it would. Big disappointment. We share in your disappointment. I think that part of the human experience is being disappointed, and finding ways to get back up and move forward. We're all different in how that works itself through. I'm one who takes longer to get going again. It's not a character defect. It's just the way I'm wired. I guess I need time to process what just happened before I can even think about moving forward. It's kind of like grief. Each of us goes through that process in our own way and at our own speed. Be encouraged knowing that it's OK to set your own pace.

As usual, once I get started with a short note, it mushrooms into a novel. Just wanted you to know I join others in praying for you in our daily prayers.

Jim

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@jimhd Jim, I am so glad you are doing somewhat better!!!!!! Oh my goodness!!!! Fabulous. And you were smart to turn off your machine to see if it was one of the things that is helping. Now you know it is!!!! God willing, you continue to at least, have this lowering of pain. You never know with Neuropathy. My DRG stimulator has been off for about 4 days, and my feet don't seem better or worse without it. My pain doc wants it off till my next appointment on Dec. 21, to figure out why I am now having other pains that I never had before. He says that the electricity can cause other pain problems. A never ending battle here. As far as depression, I too, have secondary, bad depression due to pain. I am not a depressed person by nature, at all. But pain has been a greater challenge than I ever could have imagined. I totally understand your disappearing from Connect for awhile. Depression can make me want to hide from everyone. I am so unused to that feeling. Jim, you have some people who really love you here. So when you can, appear!!!! Our lives are so fragile. Our souls suffer. Thanks so much for your message. I hope you continue to get some relief. I know your physical activity does help your depression, so keep up as best as you can. My love to you, LoriRenee1

REPLY
Hank | @jesfactsmon | Dec 10, 2020
In reply to @jimhd "@lorirenee1 I know from my own experience with the scs how difficult (my phone suggested "distressing")..." + (show)
@jimhd

@lorirenee1 I know from my own experience with the scs how difficult (my phone suggested "distressing") it is to deal with the ups and downs. My stimulator seemed to be doing nothing for the past year, but after a spinal cord decompression surgery, I met again with the rep.

Unfortunately, I made 3 changes at about that same time - scs adjusted, increased mscontin from 15mg tid to 30mg bid, and started taking Cymbalta for neuropathy. My feet have been hurting noticeably less since then, and because I wasn't sure if the stimulator was contributing, I turned it off for a week. I now know that it's helping. Pain level range went down from 5-8 to 3-6!!! Hallelujah! I think that each of the 3 changes is doing its share. And Cymbalta has lifted my energy level, so that I'm doing a list of things that have needed to be done for several years. I'm much more productive. And my wife is liking it, too.

The surgery for severe spinal stenosis may have released the pressure on the nerves going to my feet, and at the same time made it possible for the stimulator to do its job. I don't know how long it will last, but even a little bit less pain is a welcome relief.

I've been avoiding Connect for a few weeks because, even though I'm more productive, depression slithers around in my mind. With the addition of Cymbalta, I think that depression is more hidden, but with just a simple thought, I feel it in my core. Remembering a traumatic event, or just hearing a word or two triggers a stirring up of emotions. One sign of depression for me has been the inability to focus on something like filling out a monthly report. But I saved your message that started this thread so I could read what you wrote about your progress with the drg. I'm very sorry that it hasn't been doing what you hoped it would. Big disappointment. We share in your disappointment. I think that part of the human experience is being disappointed, and finding ways to get back up and move forward. We're all different in how that works itself through. I'm one who takes longer to get going again. It's not a character defect. It's just the way I'm wired. I guess I need time to process what just happened before I can even think about moving forward. It's kind of like grief. Each of us goes through that process in our own way and at our own speed. Be encouraged knowing that it's OK to set your own pace.

As usual, once I get started with a short note, it mushrooms into a novel. Just wanted you to know I join others in praying for you in our daily prayers.

Jim

Jump to this post

@jimhd
Jim, I am happy to hear that the 3 new things are combining to make your pain level lower. I guess the depression being more hidden is a good thing, but when you talk about a couple of certain words triggering an emotional (depression related) response I have to say I do know what you mean. Even though I have overcome my really bad depression from 30 years ago it still pops its head up just a bit now and then, and it can be triggered in a similar way, with a specific thought or word or phrase, etc. It can feel discouraging to know that the depression is lurking underneath the surface still. Although in my case, if I do notice it, it always disappears after a time. Hank

REPLY
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Dec 10, 2020
In reply to @lorirenee1 "@lweave Sometimes you have nothing you can do in life, but be a trooper! Ya gotta..." + (show)
@lorirenee1

@lweave Sometimes you have nothing you can do in life, but be a trooper! Ya gotta try! And I tried so hard! Lori

Jump to this post

Good evening, dear @lorirenee1. You just hit my memory bank with the comment....." and I tried so hard!" I think that is obvious and it is not you that needs any straightening up. Why does it seem that when we really don't care or haven't really been convinced about something we attempt......it turns out beautifully and the world applauds. Then when something that we've built up as a go-to, a way to improve quality of life, the desired path to comfort and ease, why is it then that we don't get the outcome we wanted. Did we ask for too much? Are we not deserving? When will it be our turn?

So....in spite of all that......we need to find the strength to try again. Maybe we are close to discovering better technological inventions that swoosh away the pain and exchange it for energy. Maybe with unconditional acceptance of ourselves, we can be more accepting of our not so dear friend, pain, and with that will come comfort.

Holding you in my thoughts..........may you be free of suffering and the causes of suffering.
Chris

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