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

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@lorirenee1

Hi again, to all my Neuropathy Friends! I had to tell you the latest news on my DRG stimulator. I just got back from seeing my pain doc and my ABBOTT rep. Both said it can easily take a good, solid, 6 weeks, and sometimes even more, to get the DRG stimulator adjusted right. The ABBOTT guy spent easily 10 minutes sending electricity to my legs, butt cheeks, ankles, and feet. I got these not so nice tingles, vibrations, that let him know how much and where to send the electricity. He wound up giving me a whole new program. Interestingly, I learned that the DRG nerves around the lumbar spine are anatomically impossible to exactly locate. Of course, the doc knows the ball park of where they generally are, but everyone is a little different. Therefore, adjustments need to be made to the machine to get just the right amount and placement of electricity. I wish they had told me ahead of surgery. I thought this was a failure, and it sounds like it is not. At least, not yet. Interestingly, when I walked out of the office, my feet moved in a more flexible fashion, like normal, human feet!!! For joy! The simple pleasure of almost normal foot movement! I wanted to dance my feet in a sprinkler! Now, let's all pray that this second program works better! Seems better already! Just to note; wouldn't it be nice if these docs took the time to really explain things? Of how bout if ABBOTT Labs, with all their money, invested in a simple brochure to help the patient understand the real deal of the DRG! And this one is for you, Hank, because I know you would be watching over Linda carefully; all ABBOTT reps are not created equal. The guy I had today was utterly thoughtful, careful, logical, and really THOUGHT!!! I don't know if I can request him, but I am going to, anyway! They are busy, and sometimes their schedules do not allow. But we have to be proactive in caring for ourselves, and I will try to have him come to my next appointment in 6 weeks. I am hopeful again. Thank God for small wonders...... Love to you all, Lori

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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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@lorirenee1

Hi again, to all my Neuropathy Friends! I had to tell you the latest news on my DRG stimulator. I just got back from seeing my pain doc and my ABBOTT rep. Both said it can easily take a good, solid, 6 weeks, and sometimes even more, to get the DRG stimulator adjusted right. The ABBOTT guy spent easily 10 minutes sending electricity to my legs, butt cheeks, ankles, and feet. I got these not so nice tingles, vibrations, that let him know how much and where to send the electricity. He wound up giving me a whole new program. Interestingly, I learned that the DRG nerves around the lumbar spine are anatomically impossible to exactly locate. Of course, the doc knows the ball park of where they generally are, but everyone is a little different. Therefore, adjustments need to be made to the machine to get just the right amount and placement of electricity. I wish they had told me ahead of surgery. I thought this was a failure, and it sounds like it is not. At least, not yet. Interestingly, when I walked out of the office, my feet moved in a more flexible fashion, like normal, human feet!!! For joy! The simple pleasure of almost normal foot movement! I wanted to dance my feet in a sprinkler! Now, let's all pray that this second program works better! Seems better already! Just to note; wouldn't it be nice if these docs took the time to really explain things? Of how bout if ABBOTT Labs, with all their money, invested in a simple brochure to help the patient understand the real deal of the DRG! And this one is for you, Hank, because I know you would be watching over Linda carefully; all ABBOTT reps are not created equal. The guy I had today was utterly thoughtful, careful, logical, and really THOUGHT!!! I don't know if I can request him, but I am going to, anyway! They are busy, and sometimes their schedules do not allow. But we have to be proactive in caring for ourselves, and I will try to have him come to my next appointment in 6 weeks. I am hopeful again. Thank God for small wonders...... Love to you all, Lori

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@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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@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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