Update on my DRG stimulator Implant. Implanted 12 days ago.

Posted by lorirenee1 @lorirenee1, Jul 21, 2020

Hi all my fellow Neuropathy Warriors, Just wanted to update you on this DRG stimulator in me. Basically, so far, not so good. It seems to help pain in the morning, pain from a 9-10, to about a 5-6, maybe a 4, at times. As the day goes on, pain gets worse. Nights are still bad. Yesterday was the first time I walked outside. I walked around the block twice, and it was wonderful to smell fresh air, use my legs, etc. However, when I came back into my house, I felt like my feet were on fire for a few hours. Another thing that I have noticed in general, is foot exhaustion. Sometimes I feel like I have ran a 35 mile marathon, and that I need endless foot massage. All in all, so far, not real good. Going to my pain doc tomorrow and will also meet my ABBOTT rep there. In hindsight, I really wish I had more good days during the trial of my DRG. I had only 3 improved days; days 7-10, and then, the doc had to remove the DRG due to risk of infection. I wish I had more good sample days!!! I am praying, of course, as my nerves in the lumbar DRG area heal, I will improve. So far, not really worth doing. Saddens me beyond belief. Thank God for Kratom. I just sent my Kratom company a "love letter." I do not know what I would do without that product, and may advocate for Kratom. What the hell! Gotta put my energy into something positive!!! Maybe some chocolate chip icecream, too. Love to each of you, Lori Renee

@lorirenee1 I'll keep praying for you, Lori. When I had my stimulator implant in 2017, it was a six week wait for it to start working because the surgical scar tissue had to heal before the electrical pulses would get through to my feet. That's definitely a layman's explanation.

I like my Abbott rep. It still rankles that I met the surgeon only one time, and that was a 15 second introduction in the surgery prep area. I never saw him before or after the implant. That's also an indication of how much information I was given. I had to do my own research online.

I'm hoping now that my pain will be reduced after back surgery enough to get my SCS reset. We don't get many guarantees in this life, and no one can know what tomorrow will bring. There's an old gospel song that says "I don't know about tomorrow, but I know He holds my hand." I'm praying for continued improvement for you, Lori.

Jim

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@fredjan2016

@lorirenee1 That is good news. I don't know anything about the DRG stimulator you had installed. I don't much about my nerve stimulator. I'm glad there is some light at the end of the tunnel.

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@fredjan2016 Hi Fred hope you are still having good luck with your device since you reported several days ago. Do you still notice help with the burning in your feet? Hank

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@jesfactsmon

Just when things seem their bleakest, suddenly a ray of light. This is great to hear Lori! Everything will remain firmly crossed for the duration, fingers, toes, anything else I can think of. Hank

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@jesfactsmon Hank, just thanks so much! Your kindness just makes my day!!!! Love to you and Linda, Lori

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@jimhd

@lorirenee1 I'll keep praying for you, Lori. When I had my stimulator implant in 2017, it was a six week wait for it to start working because the surgical scar tissue had to heal before the electrical pulses would get through to my feet. That's definitely a layman's explanation.

I like my Abbott rep. It still rankles that I met the surgeon only one time, and that was a 15 second introduction in the surgery prep area. I never saw him before or after the implant. That's also an indication of how much information I was given. I had to do my own research online.

I'm hoping now that my pain will be reduced after back surgery enough to get my SCS reset. We don't get many guarantees in this life, and no one can know what tomorrow will bring. There's an old gospel song that says "I don't know about tomorrow, but I know He holds my hand." I'm praying for continued improvement for you, Lori.

Jim

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@jimhd God Bless you, Jim. Truly. You have gone through so much, and yet you give so much to others. What is up with these doctors? Is there just this air about them, that they just cannot be bothered being people? I cannot believe you barely dealt with your surgeon, and had to learn so much on your own. And why wouldn't ABBOTT put out a basic guide to these stimulators? We certainly don't know what to even ask. Would be a blessing to feel real caring. Your gospel song is right, though. God does hold us, all. I never for a moment, give up on that. In spite of my suffering, I feel deeply connected to God. I also know that God is with me. I feel it, always. Love to you, Jim Lori

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@fredjan2016

@lorirenee1 That is good news. I don't know anything about the DRG stimulator you had installed. I don't much about my nerve stimulator. I'm glad there is some light at the end of the tunnel.

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@fredjan2016 Thanks so much. I do hope your device is helping you! This is not easy stuff!!! Lori

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In reply to @rwinney "👍🏻" + (show)
@rwinney

@rwinney Hi Rachel, Thanks for everything, always. I hope you are having a decent day today. Your fighting spirit amazes me all of the time. Any word from Mayo about going there? I am praying that Covid does not interrupt your plans in the fall to go there….Love to you, Lori

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@lorirenee1

@rwinney Hi Rachel, Thanks for everything, always. I hope you are having a decent day today. Your fighting spirit amazes me all of the time. Any word from Mayo about going there? I am praying that Covid does not interrupt your plans in the fall to go there….Love to you, Lori

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@lorirenee1 Hey – Lori! First let me let you know, I am holding out such hope for you and your DRG implant. I think time and patience will be on your side with effective relief and I am always sending positive thoughts your way.

I recently received another welcome packet from Mayo for my Oct 5th trip. I have no idea if I'll actually get there but, I'm counting on it. The thing that concerns me most is quarentine. I'm completely uninterested in being away for 5 weeks, should that be the case. On the flip side…my new Neuro Opthamologist personally called me this morning and said I would be receiving a call from a neuro opthamologist from Mayo, FL (his buddy) and supposedly, they will see me while at Mayo, for my eyes problems. I'm very excited about this possibility and keeping hope alive! Time will tell, in these uncertain times.

My best to you, my dear, for a pleasant be kind to yourself type of day. 😊

Rachel

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@rwinney

@lorirenee1 Hey – Lori! First let me let you know, I am holding out such hope for you and your DRG implant. I think time and patience will be on your side with effective relief and I am always sending positive thoughts your way.

I recently received another welcome packet from Mayo for my Oct 5th trip. I have no idea if I'll actually get there but, I'm counting on it. The thing that concerns me most is quarentine. I'm completely uninterested in being away for 5 weeks, should that be the case. On the flip side…my new Neuro Opthamologist personally called me this morning and said I would be receiving a call from a neuro opthamologist from Mayo, FL (his buddy) and supposedly, they will see me while at Mayo, for my eyes problems. I'm very excited about this possibility and keeping hope alive! Time will tell, in these uncertain times.

My best to you, my dear, for a pleasant be kind to yourself type of day. 😊

Rachel

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@rwinney That is great news I'll bet you are excited about this to be able to see the neuro opthamologist also . Keep us posted I'm happy for you .

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@lioness

@rwinney That is great news I'll bet you are excited about this to be able to see the neuro opthamologist also . Keep us posted I'm happy for you .

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@lioness Thanks a bunch Linda! 🤞🏻

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@rwinney

@lorirenee1 Hey – Lori! First let me let you know, I am holding out such hope for you and your DRG implant. I think time and patience will be on your side with effective relief and I am always sending positive thoughts your way.

I recently received another welcome packet from Mayo for my Oct 5th trip. I have no idea if I'll actually get there but, I'm counting on it. The thing that concerns me most is quarentine. I'm completely uninterested in being away for 5 weeks, should that be the case. On the flip side…my new Neuro Opthamologist personally called me this morning and said I would be receiving a call from a neuro opthamologist from Mayo, FL (his buddy) and supposedly, they will see me while at Mayo, for my eyes problems. I'm very excited about this possibility and keeping hope alive! Time will tell, in these uncertain times.

My best to you, my dear, for a pleasant be kind to yourself type of day. 😊

Rachel

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@rwinney I'll be bummed for you Rachel if by October they are still requiring the 14 day quarantine. It is such an oppressively burdensome requirement. I am not sure when I will be able to visit family in Connecticut due to this. With the 2 week quarantine we are talking about 3-4 weeks being gone from home. I prefer not to leave Linda that long and I doubt she would feel good enough to make the drive. And aside from that who can sit in a motel room for 2 weeks and not go stir crazy? Does anyone else feel these days like they are a character in some bizarre sci-fi horror flick? Anyway, I hope you can go, sans the 2 weeks in the isolation chamber. Oh, and good news about the eye specialists. Best, Hank

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@jesfactsmon

@rwinney I'll be bummed for you Rachel if by October they are still requiring the 14 day quarantine. It is such an oppressively burdensome requirement. I am not sure when I will be able to visit family in Connecticut due to this. With the 2 week quarantine we are talking about 3-4 weeks being gone from home. I prefer not to leave Linda that long and I doubt she would feel good enough to make the drive. And aside from that who can sit in a motel room for 2 weeks and not go stir crazy? Does anyone else feel these days like they are a character in some bizarre sci-fi horror flick? Anyway, I hope you can go, sans the 2 weeks in the isolation chamber. Oh, and good news about the eye specialists. Best, Hank

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@jesfactsmon Thanks for your reply Hank. Yes, it's a tough one. I will not be away from my family, let alone pay for and live in a hotel room for 5 weeks. Crazy! All I know is my air fare voucher is good through Dec. 2021 so I need to get to Mayo by then. I will be extremely disappointed if its not this Fall, and frustrated as it is my goal for improvement and clarification of my health, both mentally and physically.

Leaving Linda sounds difficult for that period of time. I understand her discomfort of riding. I will be riding in a car for almost 3 hours, next weekend, to my Fathers cabin with my children. I have not attempted such a long ride for a couple years and have no clue how I'm going to manage BUT, life can not keep passing me by. Praying that my back co-operates that day. If I'm in a flare of legs and/or back, it could be ugly. My car seats are heated so I will ride with the heat on high, laying back and unfortunately, drugged up. I hate saying that but, it is what it is. I'm very excited to have this family time so nothing will stop me!

Let's keep hoping for the best and that you get to see your family someday soon, somehow. Hi to Linda!

Be well-
Rachel

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@jesfactsmon

@fredjan2016 Hi Fred hope you are still having good luck with your device since you reported several days ago. Do you still notice help with the burning in your feet? Hank

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@jesfactsmon Thanks for the interest Hank. The stimulator definitely allows me to walk around with much reduced pain. The stimulator helps with the burning but not a lot. I still have to take Methadone for the burning feet but only about half of what I was taking. Eating sweets still makes my feet burn, so I have to watch out for carbs. Which is strange. Sweets/carbs do not spike my sugar. I think it goes up to 120 or 140 right after I eat and then goes back down. Maybe it is the Triglycerides that make my feet burn.

The doctor told me that the most pain relieve I should expect is 70%, so they knew it wouldn't block all of the pain and I would still need pain medication.

I can increase or decrease the intensity myself. They also supplied me with two different programs. So, I have been adjusting the intensity and tomorrow I'm going to try the other program they installed.

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