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Update on my DRG stimulator Implant. Implanted 12 days ago.
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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@lioness Thanks so much, Linda. I see the doc in a few weeks and will definitely be talking to him about new leg sensations and of course, about the lack of effective of the DRG so far. Thanks for your support!!! Love, Lori
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1 Reaction@rwinney Yes, Rachel, not great news at all. I will post again after I see the pain doc. I hope you are ok, and perhaps, that you are walking more since your hike? The only time my pain settles down is when I walk. Go figure. I give up. Love, Lori
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2 ReactionsOh my dear @lorirenee1, I am so just plain disgusted. You do it all the right way based upon a studious journey to find the best option for you Lori. And you, the student par excellence for neuropathy and possible treatments, so anticipated success.
Ya no......we don't expect to be cured of neuropathy....that can't happen. We don't expect to have problems and issues with proven treatments, a few adjustments maybe......a little more oomph now and then, but not this.
And I so remember how present you were for me as I was adjusting and re-adjusting medications, Every morning I knew you had my back and wished for success, freedom from pain.
So...my heart, my respect and recognition for your spirit. Take a break......eat chocolate (teasing) and give yourself a hug. Practice self-love and look again........there has to be something waiting just for you, Lori.
May you be free of suffering and the causes of suffering.
Chris
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2 Reactions@jesfactsmon Hi again, Hank, Yes, I was getting a bit of relief, especially in the mornings and early afternoon. I would say that sometime at the beginning of this week, it just stopped helping. and yes, it was helping after ABBOTT tweaked it at my last appointment. This week I both upped and lowered the electricity and nothing helped at all. I still pray that it will work, though. I cannot give up on that hope. Today I walked a lot, as my feet are in much less/no pain, when walking. Quite a bitch of a disease. I only hope that everything I tell you helps you learn and decide things about Linda. Then at least, my doing it was not completely worthless. Only time will tell. Now I gotta eat some ice cream. I do that, and it cheers me up. I think it raises endorphins, and I could use that!!!! Thanks for everything, Hank. YOU DA BEST!!!! Lori
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2 Reactions@artscaping Aww, Chris, that was just such a heart filled post you wrote me. Utterly touched my heart. I do still hope the DRG stimulator comes through, but God knows if it will. I will see my Pain Doc and ABBOTT rep in a few weeks, and maybe they can figure something out. I know one thing, and that is to never trust the simplistic ads for neuro stimulators. They are best case scenarios, often produced by people trying to sell them. You have no idea how much your support means to me. You, and everyone here, knows the real deal. We are so fortunate to have eachother. I hope your grand daughter is ok, and if ever you need anymore info on OCD, I am here to help. I hope you are handling your neuropathy Ok, and that your feet are not too cold or that you are having profuse itching. That is a form of pain in itself. My love to you, and thanks so much. Lori Renee
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2 Reactions@lorirenee1Yes ma'am, I keep pushing these legs and am making slow, steady progress which pleases me. The hike (walking trail) really opened my eyes and inspired me. I won't give up and I know you won't either my friend. Good luck at your Sept 1st appointment. I'm keeping hope alive for you! 💕
Best wishes and strength,
Rachel
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2 ReactionsGuys - I want you to know...I just ate some cherry vanilla ice cream and my endorphins are flowing! 🍨
Cheers, Lori and all that wish to cheat a little today!! 🤗
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2 Reactions@lorirenee1
Oh, how very sorry I am that the DRG isn't living up to its expectations, Lori. It's really hard, after a person has tried a medication or procedure or implant, to begin feeling some relief, only to have it lose its effectiveness. So disappointing.
Knowing you, I'm fairly sure you'll give the DRG a shot, at least until the time that you've been told it could still start doing its job. I'm kinda hanging in there until I recover from back surgery, to see if my scs will resume its work. The surgeon doing the spinal stenosis decompression is also the doctor who would move forward with other treatments, including - a big Maybe - the DRG implant. I really appreciate you keeping us posted. It's certainly going to be a factor in making the decision to do it or not do it.
I haven't read past your initial post from this morning, Thursday, so I don't know yet how others have responded. I don't want to be out of line in expressing my concern for your mental state. You know as well as anyone how pain and depression/anxiety can feed each other. I feel tears in the back of my eyes, thinking about all that you're going through right now. You have my sincere empathy, Lori. Know that I'll be praying every day for you, along with a bunch of other fellow warriors.
Jim
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2 Reactions@lorirenee1 I want to add on to what Jim says here. Lori, you should, if you can, use this forum to express your feelings fully (and I know you do, I am just trying to reinforce it here for you and anyone else). If Connect is not for expressing your emotional pain, than I don't see a lot of value in it. If and when you get down and feeling horrible over this turn of events (i.e. the DRG not helping), write about it here and don't hold back. Perhaps for some and maybe you included, there is a therapeutic value to "letting it all hang out" here on Connect. The misery of this awful state you, my Linda, and many others are in is bad enough without also not having someplace you can go to talk about it. At least people here understand you and what you are going through. Depression and despair need an outlet, and to whatever degree this can do it, great! We are your sympathetic listeners, use us. My best to you in facing this difficult trial, and I hope some light reappears for you at the end of your DRG tunnel.
🤞
Hank
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3 Reactions@jesfactsmon Awww, Hank, your kindness is just the best. It's like you know what I need! Yes, this is a very trying time for me, as I really thought that the DRG would improve my life. I still hope it does, and pray that my nerves will totally heal from surgery, and respond to the electricity in the way I had hoped. As I write, my legs are lifted on the couch, as I cannot put my feet on the ground without terrible pain starting. Somehow, leg elevation helps. At least I have this trick! Everyone here is searching for something to work. Everyone here deserves joy, and a normal life. Sometimes I get so sad reading about all of us, that it almost enhances the pain. I think I am a true empath, and I am not always sure if this is good or bad. Life can suddenly just turn. I do lose hope, and I have, deep down, a very happy, funny, spirit. Even family stops asking. I think illness can make our loved ones very uncomfortable after awhile. You are really strong, Hank, to listen to all of this. Maybe it is these deeper sharing that really connects us as human beings. I know the deep suffering here. I know how each of us try to cope with a really unbearable illness. I know God. I pray all of the time. Getting carried away here, but thanks so much. You are a gem, and Linda is a lucky lady to have you. Lori Renee
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