1. < Neuropathy

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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Hank | @jesfactsmon | Aug 26, 2020
In reply to @lorirenee1 "@jesfactsmon Hi Hank, I absolutely think that the oncologists and cancer surgeons do not want us..." + (show)
@lorirenee1

@jesfactsmon Hi Hank, I absolutely think that the oncologists and cancer surgeons do not want us to know about the possibilities of neuropathy after chemo or radiation. Sad thing is that there are some forms of chemo that do not create neuropathy, from what I have read. My oncologist and surgeon made utterly no confirmation that my having radiation could have caused neuropathy. Their faces went blank. And yet when I had my EMG/NCV test to check for neuropathy, the man who administered the test said that radiation and chemo are often what people tell him about what triggered their neuropathy. Chemo and radiation make big bucks, and I have wondered if that is behind it. If I had more cancer, I highly doubt I would expose myself to those things. I am in enough agony, and I don't need more. And the potential for them to help is not even a given. And sadly, there is not much to help neuropathy at all.....what can I even say. Love to you, Lori

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@lorirenee1 You are right! The thing they said might help Linda was a drug (you may have heard of it) called herceptin. And I am pretty sure if they had just given her the herceptin she would have been fine, i.e. probably no PN. But they said "Well, all the clinical trials were done with herceptin administered with both carboplatin and taxotere" therefore they would only give it in that combo. From what I know now both of those other two chemo drugs definitely cause neuropathy in many people, especially the taxotere, but both for sure. Funny thing (well not funny at all really) after Linda refused to complete the chemo and we got back to Tennessee from San Diego, her oncologist here said if she wouldn't take it any other way, she would agree to give her herceptin without the other two. We gave each other a knowing wink/nod and definitely refused the offer, and we decided never again agree to anything out of hand with that bunch. Harumph!!! 😠 (Can you sense any disenchantment with the cancer establishment here?)

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1 reply
sunnyflower | @sunnyflower | Aug 26, 2020
In reply to @rwinney "@sunnyflower and @lorirenee1. I have experienced occasional burning and aching around and just above my knees..." + (show)
@rwinney

@sunnyflower and @lorirenee1. I have experienced occasional burning and aching around and just above my knees as well. Heat calms it for me. I really can't think of an unaffected body part, to be honest. Polyneuropathy is equal opportunity unfortunately.

@sunnyflower Best of luck with your bone density scan. There must be some good news coming your way soon. 🤞🏻

@lorirenee1 I hope today finds you with comfort and happy distraction. 🤗

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Thank you very much! I already know I have severe osteoporosis but I'm hoping and praying it isn't any worse than my last scan revealed. I appreciate your kind words! ♥️

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lorirenee1 | @lorirenee1 | Aug 26, 2020
In reply to @jesfactsmon "@lorirenee1 You are right! The thing they said might help Linda was a drug (you may..." + (show)
@jesfactsmon

@lorirenee1 You are right! The thing they said might help Linda was a drug (you may have heard of it) called herceptin. And I am pretty sure if they had just given her the herceptin she would have been fine, i.e. probably no PN. But they said "Well, all the clinical trials were done with herceptin administered with both carboplatin and taxotere" therefore they would only give it in that combo. From what I know now both of those other two chemo drugs definitely cause neuropathy in many people, especially the taxotere, but both for sure. Funny thing (well not funny at all really) after Linda refused to complete the chemo and we got back to Tennessee from San Diego, her oncologist here said if she wouldn't take it any other way, she would agree to give her herceptin without the other two. We gave each other a knowing wink/nod and definitely refused the offer, and we decided never again agree to anything out of hand with that bunch. Harumph!!! 😠 (Can you sense any disenchantment with the cancer establishment here?)

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@jestfactsmon Hank, you really have to be a knowledgeable consumer, even with cancer. Docs only go by their latest protocols and standards as what to do, and what to use. I actually think they can get in trouble if they don't follow certain treatment standards. So it is up to us to not hurry into things that may harm us. But too late now. Damage has been done. Oy. Love to you and Linda. Lori Renee

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sunnyflower | @sunnyflower | Aug 29, 2020
In reply to @lorirenee1 "@sunnyflower Hi Sunny, You have so much going on that it is hard to know what..." + (show)
@lorirenee1

@sunnyflower Hi Sunny, You have so much going on that it is hard to know what is what! My heart breaks reading about you. Our bodies do not discriminate in giving us tons of things, all at once. I want to mention a product that has kept my bone density pretty darn good, as I have osteopenia. It is called AlgaeCal Google their website. It is great for building your bones. I take a pill that depletes my calcium, so I supplement with AlgaeCal My last bone density was quite good, and that is amazing, because the pill I have to take can rob me of calcium. So your feet feel wet, too. Horrid. I also have the walking on sponges!!! Sometimes the sponges are replaced by pebbles, so I will take the sponges. Damn illness is nuts. How could our nerves make us feel such crazy things? And these things run the gamut from excruciating, to odd, to annoying, etc. Yes, distractions do help when possible. I also think a good glass of wine helps. I hate all of this. So hard. Just so hard. Love to you, Lori

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Thanks so much Lori! Still waiting for results. I take a plant-based calcium. So far so good but being on daily steroids doesn't have a good prognosis. We'll see. I haven't broken any more bones in a while so yay! 🤗. I may have already said my endocrinologists have wanted me on an IV drug every 3 months but the side-effects can be uber serious along with the usual ones like nausea, etc. Meds are often a no-win bc of their side-effects. Everything in medicine is a risk/benefit ratio. Still though, I am extremely grateful for the care I receive! Extremely! Be well, Sunnyflower PS: does one ever catch up on all the post? It feels like I'm spinning my wheels trying to keep current. My eye strain has never felt so bad LOL, but I'm hooked on the blog, No Doubt! Everyone is really great! Warmest regards, Sunnyflower 😊

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Mentor
Jim, Volunteer Mentor | @jimhd | Aug 30, 2020

@sunnyflower I get overwhelmed sometimes, too, by the volume of messages in my inbox every day. Some days I manage to make it through all of them, but I have to speed my way through them. There's no way I can respond to them all. I try to comment when I think I might have something to contribute. You do a great job of writing short words of encouragement. Often that's just what's needed.

Jim

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1 reply
sunnyflower | @sunnyflower | Aug 30, 2020

Thanks so much Jim! I am honored to be a part of this blog thus, precious souls. I have received so much and pray I can give back even a little, to somebody or hopefully, some bodies! Have a blessed Sunday and pain begone is my wish for you! Take special care of yourself, Sunnyflower

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Hank | @jesfactsmon | Aug 30, 2020
In reply to @jimhd "@sunnyflower I get overwhelmed sometimes, too, by the volume of messages in my inbox every day...." + (show)
@jimhd

@sunnyflower I get overwhelmed sometimes, too, by the volume of messages in my inbox every day. Some days I manage to make it through all of them, but I have to speed my way through them. There's no way I can respond to them all. I try to comment when I think I might have something to contribute. You do a great job of writing short words of encouragement. Often that's just what's needed.

Jim

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@jimhd @sunnyflower I agree there is a lot going on here in Connectland. But if I had my druthers I'd prefer to have too much to read rather than the whole place being dead and feeling like a ghost town. On the other hand that might mean people were not in so much pain and were out leading their lives doing some fun things instead of posting, so I guess that makes me ambivalent. I will hope for the ghost town if it means all my friends here are no longer in pain. Meanwhile, as I wait for that day I am happy to be able to interact with you all! Best, Hank

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Hank | @jesfactsmon | Sep 2, 2020
In reply to @billielynne "What is Kratom? Never heard of it!" + (show)
@billielynne

What is Kratom? Never heard of it!

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Hi @billielynne there's a lot of info online about it if you do a Google search. Or you can search for it using the search field at the top of this page (look for the little magnifying glass) to find mentions of it in the Mayo Connect world. Our resident kratom expert user that I am aware of is Lori @lorirenee1 who might want to chime in, or you are welcome to post a message using her member name, i.e. @lorirenee1 . Good luck in your quest. Best, Hank

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lorirenee1 | @lorirenee1 | Sep 2, 2020
In reply to @billielynne "What is Kratom? Never heard of it!" + (show)
@billielynne

What is Kratom? Never heard of it!

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@billielynne @jesfactsmon Hi Billie lynne, please private message me if you want to know about Kratom. It is not FDA approved, so moderators would appreciate my not posting about it here, and I love my moderators!!! So, I am LoriRenee1 if you want to know about it. Thanks, Lori

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