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

Posted by lorirenee1 @lorirenee1, Tue, Jul 21 11:57am

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 am greatly disappointed for you Lori Renee. I wished so bad, this was your ticket to pain relief. I remember my nerve block trials through pain management. I had to rate the pain relief and decide if it was worthy of the next step, radio frequency ablations. To be honest, there was a foggy area…is this helping or am I willing it to help out of my desire for wanting relief. I feel for you but, shall remain super hopeful for your future, with or without the DRG. My best wishes and hugs are sent your way. 😊 Rachel

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@lorirenee1 I,m so sorry it hasn't been good for you yet maybe more adjustment will help for relieve maybe it's like a trial and relieve thing Praying for you 🙏❤️😇 stay strong

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Lori, yes this does not sound good so far. It would be nice to read or hear what a consensus is among a large number of people who have been through it, to get a sense of if there are any patterns in the results people have had, or how long it can take to get to some significant good results. Perhaps it will take a certain amount of time, more than it has been so far. And maybe you just haven't hit the magic voltage level yet. Don't lose hope. I am sending as many positive, loving healing vibes as I can your way. And you should send some to yourself as well. Do hang in there. If possible perhaps your husband can massage your feet. I find with Linda, all hands-on touch, massage, etc. can really produce some positive energy transfer sometimes. Hang in there sweetheart, we are all pulling for you, don't lose hope. Hank

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@rwinney

@lorirenee1 I am greatly disappointed for you Lori Renee. I wished so bad, this was your ticket to pain relief. I remember my nerve block trials through pain management. I had to rate the pain relief and decide if it was worthy of the next step, radio frequency ablations. To be honest, there was a foggy area…is this helping or am I willing it to help out of my desire for wanting relief. I feel for you but, shall remain super hopeful for your future, with or without the DRG. My best wishes and hugs are sent your way. 😊 Rachel

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@rwinney Hi Rachel, I certainly know what you mean about that foggy area in which you wonder if something really helped! I could swear I had less pain for 3 days of the trial! I pray that this gets better. It's ludicrous to go through all this without real results. Time will tell, but thanks for your support!!! Love to you, Lori

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@lioness

@lorirenee1 I,m so sorry it hasn't been good for you yet maybe more adjustment will help for relieve maybe it's like a trial and relieve thing Praying for you 🙏❤️😇 stay strong

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@lioness Thanks so much for your support. It is a trial and error kind of a thing. Adjusting the right amount of electricity seemed to do it during the trial, and I can only pray that I am slow to respond. No fun at all. Thanks so much! Love, Lori

Liked by lioness

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@jesfactsmon

Lori, yes this does not sound good so far. It would be nice to read or hear what a consensus is among a large number of people who have been through it, to get a sense of if there are any patterns in the results people have had, or how long it can take to get to some significant good results. Perhaps it will take a certain amount of time, more than it has been so far. And maybe you just haven't hit the magic voltage level yet. Don't lose hope. I am sending as many positive, loving healing vibes as I can your way. And you should send some to yourself as well. Do hang in there. If possible perhaps your husband can massage your feet. I find with Linda, all hands-on touch, massage, etc. can really produce some positive energy transfer sometimes. Hang in there sweetheart, we are all pulling for you, don't lose hope. Hank

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@jesfactsmon Hi Hank, I love hearing you here. Such a good man. You are right in wishing I could have read a consensus among a lot of people who have tried this thing. I did find a real neuro stimulator forum, where real people talked about their various stimulators, but the DRG was not among the discussion. I did learn how difficult stimulators can be, in general. Even the ones that are really advertised did not get great reviews. Had I to do it again, I would have asked my doc for real patients to talk to. God knows if he could do that. I just know I had a few real good days on the trial. I even remember being pain free one night, which is unheard of for me. Maybe in time I will improve. As far as feet rubs from my husband, frankly, he does not have tremendous compassion. Not in his wiring. Bluntly honest here, and foot rubs are not going to happen. I actually bought a foot messager that did not reach the toes or balls of my feet where all the pain is, so it was pretty worthless.

Liked by HankB

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@jesfactsmon Whoops, Hank!!! Musta hit something here, and my message posted! Anyway, took Kratom today, and feel good. Thank God for relief. I am hoping each day gets better. Who knows. I will post when I have more to say! Linda is lucky to have such a good man, Hank! Thanks for everything. Love to you, Lori

Liked by HankB

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@lorirenee1

@jesfactsmon Whoops, Hank!!! Musta hit something here, and my message posted! Anyway, took Kratom today, and feel good. Thank God for relief. I am hoping each day gets better. Who knows. I will post when I have more to say! Linda is lucky to have such a good man, Hank! Thanks for everything. Love to you, Lori

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Thanks goodness you have kratom! To be up a creek (meaning PN pain) without any sort of paddle (like kratom, cannabis, whatever does it for one) would take any of us to the depths of despair. I do not pretend to know why certain things happen to certain people but I am firmly of the camp that nothing ever happens without a reason. We do not get to know what the reasons are but that is just how it works. Just don;t give up hope for better things coming, as nothing, either good or bad, lasts forever. Just remember the old saying "this too shall pass". Love to you. Hank

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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

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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👍🏻

Liked by lorirenee1, HankB

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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

Liked by lorirenee1

REPLY
@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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