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

@helennicola

Hi Rachel, i want to wish you a lovely trip next week and hope the magnesium will help. I often get leg cramps and creepy crawly feeling in my legs at night despite taking magnesium pills. I use a magnesium cream which works well and have also used the Hylands leg cramp pills which sometimes work on the jittery feelings. With regard to genetics, I thought I remember your mentioning your Mother having a chronic pain problem in the past which might shed some light on your current issues? It seems to me to be very unusual for just a vit. B deficiency to have gone undetected for so long as to cause such extreme health issues, I would not have been happy with my family care physician for having missed this. Helen

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@helennicola Hi Helen. You are too sweet! Thank you for your advice, inquiry to my health and well wishes for my trip. Yes, my Mother had a motorcycle accident in 1978, broke both legs and has endured chronic pain ever since. While going through extensive testing to find an underlying cause to my Small Fiber Polyeuropathy diagnosis, genetic testing was performed. It concluded as unremarkable. I do know my migraines are hereditary as well as my cornea disease. As far as how my body has handled disruptions and became chronic….my thoughts are Chronic Pain Sensitization which maybe my neurologist will conclude in August when I see him, or, Mayo will have some revelation in October at the pain clinic. Til then, such is life. I try hard to remain optimistic and you folks here on Connect have been a huge help and inspiration to me. I cant thank everyone enough. 💕

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@rwinney

Apparently, yes, B12 deficiency. I believe it was caught way to late.

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@rwinney You think the burning achy legs are from B12 defiency Mine started after my fracture in 05 but has gradually gotten worse. I,LL have to mention this to my Dr It's only my thighs but heat does help I just use a heating pad

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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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Good afternoon @lorirenee1. I just read your post a few times to make sure it actually said what I wanted to see. I can just invision beginning to have freedom from discomfort and pain. And the walking, the fresh air. Enjoy every moment.

I also wanted to tell you that you have mentioned an issue that I have noticed with my practitioners and clinicians, they do not tell you everything you really need to know about a treatment or medication before you make a decision. The best decisions are made by folks who have the most information about the choices. Those of us who work hard to become our own advocates seem to do pretty well. Keep up the good work and the good news.

May you feel joy today.
Chris

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@rwinney

@jesfactsmon My trip is next weekend Hank. For me, heat settles the pain temporarily. Probably by warming the muscles and keeping them from tightening due to defective nerve function around them. I find heat to be my savior most days. My calves, thighs and knees suffer from terrible aching, burning and muscle pain so I wrap my legs a lot. My back and hips experience the same, plus tightening and spasm, and heat is a great help. It's used each week by my PT before he performs myofacial release therapy.

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Rachel @rwinney I hope your trip to the cabin is still on for this weekend. I want to wish you the very best time possible with your family and I hope you have not just a tolerable drive up but a NICE one. You, my friend, deserve it!!!!!! All my best, and with love, Hank

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Hey Lori @lorirenee1 , it's been a whole week since you sent this last update on your DRG out. Can you shoot off an update? I am dying to know if it's helping more or less (hoping more)🤞. Hank

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@jesfactsmon

Hey Lori @lorirenee1 , it's been a whole week since you sent this last update on your DRG out. Can you shoot off an update? I am dying to know if it's helping more or less (hoping more)🤞. Hank

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@jesfactsmon Awww, God Bless you, Hank! I think I lost track of time. I did not want to be obnoxious constantly posting! Yes, the DRG is absolutely improving my pain level. I have gone without pain meds till the evening, which is a miracle for me! Pain at night can still be pretty bad, and my feet are by no means, normal feeling. My feet get utterly exhausted from nothing, as if I ran a marathon. Toes contort, out of the blue. Have to start all my foot exercises again, as Neuropathy progresses, even though pain is better. My muscles are not normal from the neuropathy, hence the weak feet. Also so weak from surgery still. Just walked twice around my block where I live, and it was glorious. Loved every bit, though exhausted. I do hope that this machine works even better with time. I see my Pain Doc and one of the ABBOTT reps at the beginning of September. I don't know if they will adjust the machine again, but after I adjusted to less electricity twice, I think it may be just right. So, yes!!!! Much less pain!!! A miracle!!! Now for foot strengthening! One crazy thing; shoes remain a problem. To find a shoe that doesn't kill me is very hard. Time will tell! This whole thing is not for sissies. But I either did it, or probably would have ended my life. Not kidding, either. Could no longer bare it, at all. I can't say how kind you are. God in heaven, just the kindest soul. Tell Linda everything. I did talk to my ABBOTT rep about Linda and her technology phobia. They said they would definitely help her out ahead of time!!! At least my group would, but you would find that out where you are. It is simple, but fear can stop us from many things!!!! Love to you always, Lori

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@jesfactsmon

Rachel @rwinney I hope your trip to the cabin is still on for this weekend. I want to wish you the very best time possible with your family and I hope you have not just a tolerable drive up but a NICE one. You, my friend, deserve it!!!!!! All my best, and with love, Hank

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@rwinney I have been negligent here, Rachel. Hank just reminded me of you!!!! He is a good boy!!!! I have been caught up in these stinky feet of mine!!! But they are improving! Like he just said, I hope you are alright with your trip! No one deserves a touch of pleasure more than you! You have such tenacity and spirit! We all learn from you! When you are able, if you can, tell us all how you are doing! I always picture teaching the class at Mayo, not being a patient at it! My best to you, Love, Lori

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@jesfactsmon

Rachel @rwinney I hope your trip to the cabin is still on for this weekend. I want to wish you the very best time possible with your family and I hope you have not just a tolerable drive up but a NICE one. You, my friend, deserve it!!!!!! All my best, and with love, Hank

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@jesfactsmon Yes! Here now!! Thanks so much Hank, for your thoughtfulness. Ride was manageable and the distraction of being with my loved ones, on a small adventure, is just what the Dr. ordered.

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@lorirenee1

@rwinney I have been negligent here, Rachel. Hank just reminded me of you!!!! He is a good boy!!!! I have been caught up in these stinky feet of mine!!! But they are improving! Like he just said, I hope you are alright with your trip! No one deserves a touch of pleasure more than you! You have such tenacity and spirit! We all learn from you! When you are able, if you can, tell us all how you are doing! I always picture teaching the class at Mayo, not being a patient at it! My best to you, Love, Lori

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@lorirenee1 Thank you my friend. Haha about Mayo! 😊 I'm holding up ok. Distraction always takes my mind away to a much better place than the world of pain. May you find happy distraction today. XOXO Rachel

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@lorirenee1

@jesfactsmon Awww, God Bless you, Hank! I think I lost track of time. I did not want to be obnoxious constantly posting! Yes, the DRG is absolutely improving my pain level. I have gone without pain meds till the evening, which is a miracle for me! Pain at night can still be pretty bad, and my feet are by no means, normal feeling. My feet get utterly exhausted from nothing, as if I ran a marathon. Toes contort, out of the blue. Have to start all my foot exercises again, as Neuropathy progresses, even though pain is better. My muscles are not normal from the neuropathy, hence the weak feet. Also so weak from surgery still. Just walked twice around my block where I live, and it was glorious. Loved every bit, though exhausted. I do hope that this machine works even better with time. I see my Pain Doc and one of the ABBOTT reps at the beginning of September. I don't know if they will adjust the machine again, but after I adjusted to less electricity twice, I think it may be just right. So, yes!!!! Much less pain!!! A miracle!!! Now for foot strengthening! One crazy thing; shoes remain a problem. To find a shoe that doesn't kill me is very hard. Time will tell! This whole thing is not for sissies. But I either did it, or probably would have ended my life. Not kidding, either. Could no longer bare it, at all. I can't say how kind you are. God in heaven, just the kindest soul. Tell Linda everything. I did talk to my ABBOTT rep about Linda and her technology phobia. They said they would definitely help her out ahead of time!!! At least my group would, but you would find that out where you are. It is simple, but fear can stop us from many things!!!! Love to you always, Lori

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Oh, such great news Lori, can't tell you how glad this makes me. You, of ANYONE, deserve this relief from 8-10 pain level 24/7 every day. Unimaginable!!! I am praying for this to be the answer for you. You are too kind and sweet a person to live as you were. Enjoy the walks and let's find you some comfortable shoes. Yes! God bless you. Hank

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@rwinney

@jesfactsmon Yes! Here now!! Thanks so much Hank, for your thoughtfulness. Ride was manageable and the distraction of being with my loved ones, on a small adventure, is just what the Dr. ordered.

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Is this a postcard you bought on the trip up? You didn't take this today did you? It looks pretty idyllic. Reminds me of my grandparent place in Delaware a lot. Glad the trip up was a good one. Have fun!

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@rwinney

@jesfactsmon Yes! Here now!! Thanks so much Hank, for your thoughtfulness. Ride was manageable and the distraction of being with my loved ones, on a small adventure, is just what the Dr. ordered.

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@rwinney Looks so relaxing enjoy

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