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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@fredjan2016

@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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That is great news about your improved walking ability Fred. The difference in a person's day between being able to walk one or two minutes vs. 30 minutes or more has got to seem amazing. And liberating. And I hope you get anything even close to 70% pain reduction. I know from my wife's experience that getting just a 30% reduction for any significant period of time makes a HUGE difference. So Fred, as they say down under, "Good on ya!" -Hank

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@rwinney

@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 @rwinney And of course, to all other pain warriors, that are up to reading this long thing!!! Hi, guys! Love to you!!!! Kisses, even! You have no idea how hard it is for me not to hug people. This Covid Shit wreaks havoc on my huggometer. I am a hugger by nature, and this social distancing is making me nuts. Virtual hugs??? OY. But the best we can do. Ms. Rachel, You get yourself to that cabin by hook, or by crook. I understand drugging yourself up to get there. I am the Queen of being drugged up. I think once you get there, you will be happy to be there. God willing, the pain will be at a tolerable level. Covid better not screw up your Mayo trip. Two weeks of Quarantine while there, is just not worth it. At least you have till December with your airplane. In a way, I do feel the safer you would be the more into the future your journey is! But I know how bad you want to go in the fall. Time will tell. I am scared to death about kids and teachers going back to school/jail. It won't be a nurturing place without physical connection. So ill conceived. WAIT HANK! I am getting to you!!!! I think it is wonderful to go see family, but I do understand that being away from Linda too long may just be too much. Sitting in a hotel room in quarantine really is right out of the Twilight Zone. I did like Rod Searling. He was creepy and handsome. My kinda guy. I tell my husband we are lucky to be old, going through Covid. Can you imagine these kids, with utter raging hormones, staying apart from eachother? Guides for kissing with a mask on? This is tragic. Yeah, glad we are older, and are not quite as active as the young people. (Except for Jim. That guys does not stop!!!!) Also, again, thanks, both of you, all of you, actually, for your well wishes. I just turned the electricity down on the toes of both my feet. Horrible pain. Took a hit of vape, and not in touch with the pain as much. I hate the days when I am off Kratom, but it can be addictive, so I cannot take it daily. So this hit of vape is pretty good. I am surprised that the electricity in the machine does not frizz my hair. I have very curly, red hair, and anything is possible. Maybe I could look like Elsa Lancaster, from The Bride of Frankenstein! Anyway, love to all of you. I could go for a big hug. Would probably make me cry. Love, Lori

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@lorirenee1

@jesfactsmon @rwinney And of course, to all other pain warriors, that are up to reading this long thing!!! Hi, guys! Love to you!!!! Kisses, even! You have no idea how hard it is for me not to hug people. This Covid Shit wreaks havoc on my huggometer. I am a hugger by nature, and this social distancing is making me nuts. Virtual hugs??? OY. But the best we can do. Ms. Rachel, You get yourself to that cabin by hook, or by crook. I understand drugging yourself up to get there. I am the Queen of being drugged up. I think once you get there, you will be happy to be there. God willing, the pain will be at a tolerable level. Covid better not screw up your Mayo trip. Two weeks of Quarantine while there, is just not worth it. At least you have till December with your airplane. In a way, I do feel the safer you would be the more into the future your journey is! But I know how bad you want to go in the fall. Time will tell. I am scared to death about kids and teachers going back to school/jail. It won't be a nurturing place without physical connection. So ill conceived. WAIT HANK! I am getting to you!!!! I think it is wonderful to go see family, but I do understand that being away from Linda too long may just be too much. Sitting in a hotel room in quarantine really is right out of the Twilight Zone. I did like Rod Searling. He was creepy and handsome. My kinda guy. I tell my husband we are lucky to be old, going through Covid. Can you imagine these kids, with utter raging hormones, staying apart from eachother? Guides for kissing with a mask on? This is tragic. Yeah, glad we are older, and are not quite as active as the young people. (Except for Jim. That guys does not stop!!!!) Also, again, thanks, both of you, all of you, actually, for your well wishes. I just turned the electricity down on the toes of both my feet. Horrible pain. Took a hit of vape, and not in touch with the pain as much. I hate the days when I am off Kratom, but it can be addictive, so I cannot take it daily. So this hit of vape is pretty good. I am surprised that the electricity in the machine does not frizz my hair. I have very curly, red hair, and anything is possible. Maybe I could look like Elsa Lancaster, from The Bride of Frankenstein! Anyway, love to all of you. I could go for a big hug. Would probably make me cry. Love, Lori

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I hear you Lori, this whole new world is depressing. I try not to refer to it as "the pandemic" but rather "the lockdown", the reason being that I believe the lockdowns are overdone. I think when all is said and done we're all going to be exposed to it like it or not, lockdowns or no lockdows. But that's just me. Sorry to hear you are having another bad pain day. The DRG is going to take whatever sweet time it's going to take, but I just feel it's going to work for you. As for being in the "older" category, not much we can do about it so might as well look at the positives. Early "senior" shopping at stores, senior discounts sometimes, absentee ballots if you're over 60, etc. I guess enjoy what's to enjoy about being somebody who has lived through a period of history nobody under 30 knows anything about. I spoke to two girls, both about twenty recently. I asked both of them whether they had ever heard of….I reeled off a bunch of names, like Bette Davis, Paul Newman, Clark Gable, Cary Grant, Jimmy Stewart, etc.. Neither of them (one from Ct. one from TN) had heard of ANY of them. Don't know why I was so surprised, kids these days do NOT watch old movies. I'm not sure they even watch new movies. Mostly they are texting and Insta-gramming,or Tindering, or whatever. I don't even know what they are doing. Nor do I want to know actually. OK, I am officially a curmudgeon. Any, best to you Lori, Hank

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@jesfactsmon

I hear you Lori, this whole new world is depressing. I try not to refer to it as "the pandemic" but rather "the lockdown", the reason being that I believe the lockdowns are overdone. I think when all is said and done we're all going to be exposed to it like it or not, lockdowns or no lockdows. But that's just me. Sorry to hear you are having another bad pain day. The DRG is going to take whatever sweet time it's going to take, but I just feel it's going to work for you. As for being in the "older" category, not much we can do about it so might as well look at the positives. Early "senior" shopping at stores, senior discounts sometimes, absentee ballots if you're over 60, etc. I guess enjoy what's to enjoy about being somebody who has lived through a period of history nobody under 30 knows anything about. I spoke to two girls, both about twenty recently. I asked both of them whether they had ever heard of….I reeled off a bunch of names, like Bette Davis, Paul Newman, Clark Gable, Cary Grant, Jimmy Stewart, etc.. Neither of them (one from Ct. one from TN) had heard of ANY of them. Don't know why I was so surprised, kids these days do NOT watch old movies. I'm not sure they even watch new movies. Mostly they are texting and Insta-gramming,or Tindering, or whatever. I don't even know what they are doing. Nor do I want to know actually. OK, I am officially a curmudgeon. Any, best to you Lori, Hank

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@jesfactsmon I think we do need to see the bright side, whenever possible. I actually don't mind aging much, but once illness hits, it really does a whammy. I still like to surround myself with things to make me happy. Right now, waiting for a marijuana gummie to kick in. This particular stuff makes my mood good, and distances pain. As far as young kids, they are missing out on lots of things we enjoyed!!!! And not to know of some of the best old time movie stars? A shame! Jimmy Stewart; the best!!! Love to you, Hank

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Hi @lorirenee1 I agree kids today are missing out on the simple things in life we once enjoyed. I remember as kids we were playing outdoors all the time. My husband and I love watching the old movies and actors. Sad to think the people on those movies are not around anymore. Now with this pandemic the old shows are becoming more available to watch.

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@lorirenee1 Age 50 was a turning point as far as health goes. So many things started happening. Gallbladder removed because it quit working. Sleep study led to using a CPAP machine. Mental health getting screwed with. Everything just seemed to go downhill from there. And now I'm treacherously close to 70, just 21 days away. Sometimes I feel old, but most of the time I live like I'm 30 something. Just a little slower.

I'm glad you have multiple solutions to the pain. It means a lot to have a break from it, even though it doesn't last long. As a rule, I don't think about the pain when I'm busy doing something. It's when I stop and sit down that it hits me.

And when I lie down at night, as I did a while ago. Subtle way of saying I need to turn my phone off and put on my Bipap mask and start trying to go to sleep.

Good night.

Jim

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@rwinney

@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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Hi Rachel, not sure if you are on your trip to the cabin already but I was wondering about your mention of using heated seats for you back/legs in the car. Does the heat help the pain? Is it therapeutic as well, i.e. does it improve the back/leg issues as also? Or does it simply help you to keep your muscles warm and therefore more comfortable? Might seem like a dumb question but I found your mention of it interesting to me.

If you ARE on your trip I hope you are having a great time! Best, Hank

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@jesfactsmon

Hi Rachel, not sure if you are on your trip to the cabin already but I was wondering about your mention of using heated seats for you back/legs in the car. Does the heat help the pain? Is it therapeutic as well, i.e. does it improve the back/leg issues as also? Or does it simply help you to keep your muscles warm and therefore more comfortable? Might seem like a dumb question but I found your mention of it interesting to me.

If you ARE on your trip I hope you are having a great time! Best, Hank

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@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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@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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Whoa. Unbelievable, your leg situation. And you think this all triggered from a b12 deficiency? Forgive me for asking if you've already said this before, but I am wondering if anyone else you are related to has anything similar to what you have? It's weird how this crops up. Linda has no one in her family that has anything like her health issues. It's strange.

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@jesfactsmon

Whoa. Unbelievable, your leg situation. And you think this all triggered from a b12 deficiency? Forgive me for asking if you've already said this before, but I am wondering if anyone else you are related to has anything similar to what you have? It's weird how this crops up. Linda has no one in her family that has anything like her health issues. It's strange.

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Nope. My father is diabetic, that's all

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@rwinney

Nope. My father is diabetic, that's all

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

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@rwinney

Nope. My father is diabetic, that's all

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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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