Covid may be messing with my DRG Trial

Posted by lorirenee1 @lorirenee1, May 15, 2020

Hi all, Last night, my pain doc's nurse called me to possibly schedule my DRG trial for next week, but that she was still working on some things. She said she would call me back today, and now, she just told me that Covid Guidelines make me too old to have my trial at this time, but was still "working on it," whatever that means. I am 68, and the cut off age in Illinois, due to Covid, is 65. Us older people are considered at risk, and most likely, I would imagine, docs don't want law suits. Meanwhile, the nurse says she is still calling me back today, and to keep hopeful. My pain doc still wants to do it, but the surgical wing follows the law. Meanwhile, the tears are coming like a turned on faucet. I just had a third of a marijuana gummy, because it seems to not only help pain, but mood. I could use that right now. It takes about an hour for the gummy to kick in. What a way to live. Pain, high, more pain, more marijuana……and now, I am too old for a trial under Covid law. I will keep everyone updated. This sucks. Lori Renee

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@lorirenee1

@jesfactsmon @rwinney Hi Hank, Rachel, and all my fellow Neuropathy sufferers….First, Thanks for your kindness. Just that, lifts my spirits. I have been sleeping all day. Woke up with headache from the local anesthesia, and throbbing in lumbar spine, where wires were put thru the DRG nerve cells, close to the spine. No relief of feet pain yet. Perhaps, subtle differences. I can put my feet on the ground. I can never do that. My shoes feel less horrid. Just subtle change so far. As far as the procedure, the headache and lumbar spine pain are nothing at all, compared to foot pain. Very nothing in comparison. ABBOTT lab rep calls tomorrow, to adjust my foot ipad that controls each foot, and amps up or down, or whatever the hell they do. Gotta go back to sleep. That 's really it. I will keep you guys posted. Prayers will be welcome. God likes me. I know that……cause I love God. Love, Lori

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@lorirenee1 So glad to hear from you today. I feel satisfied just knowing you've begun this new journey of hope. Wishing you a peaceful evening and looking forward to hearing more good stuff! Keep fighting. 💪🏼

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Hi, all my fellow Neuropathy Sufferers; This is Day 2 of my DRG trial. Yesterday, I had no relief for the feet at all, but the ABBOTT rep says that it can take a few days for it to start helping. The nerves in which the wires are routed in have been irritated due to the procedure, and therefore, it is common to not get any relief for a few days. Today, I have had my feet up on my coffee table for about an hour, without pain. That is a miracle. I have not been pain free for an hour for easily a few months. I am exhausted from the surgical procedure, but my back has stopped throbbing where the wires are. I have been awake for about an hour and a half, and I am beginning to need a nap; hey, I just had surgery! Anyway, thought I would share, and keep posting to let you all know what is going on. If this helps in any way, I am thankful Love to all of you, Lori

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@lorirenee1

Hi, all my fellow Neuropathy Sufferers; This is Day 2 of my DRG trial. Yesterday, I had no relief for the feet at all, but the ABBOTT rep says that it can take a few days for it to start helping. The nerves in which the wires are routed in have been irritated due to the procedure, and therefore, it is common to not get any relief for a few days. Today, I have had my feet up on my coffee table for about an hour, without pain. That is a miracle. I have not been pain free for an hour for easily a few months. I am exhausted from the surgical procedure, but my back has stopped throbbing where the wires are. I have been awake for about an hour and a half, and I am beginning to need a nap; hey, I just had surgery! Anyway, thought I would share, and keep posting to let you all know what is going on. If this helps in any way, I am thankful Love to all of you, Lori

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Lori that sounds very promising, your first pain free hour in months!!! Thanks for the update, if you listen very carefully you may hear some noises in the background, very faint. That would be Linda and I clapping and cheering wildly in the very great distance.😊

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@jesfactsmon

Lori that sounds very promising, your first pain free hour in months!!! Thanks for the update, if you listen very carefully you may hear some noises in the background, very faint. That would be Linda and I clapping and cheering wildly in the very great distance.😊

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@jesfactsmon I swear, Hank and Linda, the rainbow in all of this is meeting you guys. I really do not know what I would do without you!!!! The ABBOTT rep just adjusted my machine today, and made my shins and calves vibrate. Holy shit! I am wired for sound. Then I did some more adjusting on my foot Ipad, and it tuckered me out. Just learning this was enough for the day. Although I still feel like I have cement in the balls of my feet, I can move my toes. I never was able to move them before. They move kinda spazzy, but at least they are moving. And I have taken about half the marijuana i usually take. Kiss Linda, Hank. Linda, kiss Hank. That will make me smile. I will update when I have the energy again. God Bless the two of you. Lori

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@lorirenee1

@jesfactsmon I swear, Hank and Linda, the rainbow in all of this is meeting you guys. I really do not know what I would do without you!!!! The ABBOTT rep just adjusted my machine today, and made my shins and calves vibrate. Holy shit! I am wired for sound. Then I did some more adjusting on my foot Ipad, and it tuckered me out. Just learning this was enough for the day. Although I still feel like I have cement in the balls of my feet, I can move my toes. I never was able to move them before. They move kinda spazzy, but at least they are moving. And I have taken about half the marijuana i usually take. Kiss Linda, Hank. Linda, kiss Hank. That will make me smile. I will update when I have the energy again. God Bless the two of you. Lori

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Will do on the kissing, Lori, never a problem for us. Pretty exciting news coming out of Northern Illinois today, Woo-woo! Keep up the progress.

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@jesfactsmon

Will do on the kissing, Lori, never a problem for us. Pretty exciting news coming out of Northern Illinois today, Woo-woo! Keep up the progress.

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Hi all my fellow Neuropathy sufferers. This is day 3 of my DRG trial. Yesterday and today, the pain is bad. My ABBOTT rep did another calibration of my foot IPad, and explained that it is like getting just the right amount of medication to be effective. Interestingly, at first she raised the electric current, and today, she lowered it again. She says the nerves have to adjust to the wires and electricity. I may have to meet her and my Pain Doc tomorrow to have him help her. One thing that is noticeably better, is that my feet don't feel as odd in shoes, and my toes are wiggling. So there is hope. I cried a few times today, which I am sure helps nothing, but this is creepy stuff, and I had to let the stress out. As far as the surgery itself, each day I feel better. My back no longer throbs where the DRG wires were put in, and I am not as exhausted. It is not an awful procedure. But I am such a pain warrior anyway! Please. All prayers welcome. Many of them. I will write again, as I know more…..taking a nap now. Lori, with love to all…..

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@lorirenee1

Hi all my fellow Neuropathy sufferers. This is day 3 of my DRG trial. Yesterday and today, the pain is bad. My ABBOTT rep did another calibration of my foot IPad, and explained that it is like getting just the right amount of medication to be effective. Interestingly, at first she raised the electric current, and today, she lowered it again. She says the nerves have to adjust to the wires and electricity. I may have to meet her and my Pain Doc tomorrow to have him help her. One thing that is noticeably better, is that my feet don't feel as odd in shoes, and my toes are wiggling. So there is hope. I cried a few times today, which I am sure helps nothing, but this is creepy stuff, and I had to let the stress out. As far as the surgery itself, each day I feel better. My back no longer throbs where the DRG wires were put in, and I am not as exhausted. It is not an awful procedure. But I am such a pain warrior anyway! Please. All prayers welcome. Many of them. I will write again, as I know more…..taking a nap now. Lori, with love to all…..

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Prayers sent, should arrive shortly. We are on pins and needles (awkward expression to send to a neuropathy sufferer I guess) awaiting positive results, which it sounds like are already starting somewhat. We're with you Lori, all the way!

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@jesfactsmon Hank, you are a dear one. Just so dear. Just made appt with my ABBOTT rep and pain doc for tomorrow. I will put your prayers under my pillow tonite. God Bless you, Hank. I will keep updating as I know more. Love to you. Lori

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@lorirenee1

@jesfactsmon Hank, you are a dear one. Just so dear. Just made appt with my ABBOTT rep and pain doc for tomorrow. I will put your prayers under my pillow tonite. God Bless you, Hank. I will keep updating as I know more. Love to you. Lori

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Hi, Lori Renee with latest update on my DRG trial. First, this trial is not for sissies. Not easy. Yesterday, I met with my pain doc and ABBOTT rep to calibrate the electricity running thru the wires at my DRG nerves. Essentially, I was given "Program 2," and after several electrical feelings running thru my feet, calves, and shins, the ABBOTT rep got what she felt might better help my pain. Well, no she did not. By evening, the ball of my left foot felt like it was in a vice. Emergency call to her, and she lowered some electricity. Within an hour, the vice softened. Today, she went back to her original "Program 1," and I am getting relief again. They try to calibrate just the right amount of electricity. Kind of like the story of "The Three Little Bears." Goldilocks finally sits on the chair that is "just right." The trial ends Monday, and till then, she tries to get it better and better. I would say that right now, I am about 40% better. If I can help one person here decide if they want to try this, I am happy. Please. More prayers coming to me. No joke. This is not for sissies. Hank, your wife would have to learn a touch of technology to do this trial. It is imperative. But you really could meet the ABBOTT tech before the trial begins, and get Linda familiar how to use the foot ipod. It is very easy. Boils down to a plus, for more electricity, and a minus, for less. A touch more complicated, but not much. Otherwise, you would have to be at each phone call, put the phone on speaker phone, and help the rep and Linda use the Ipod. Knowing you, Hank, you would do this for Linda. But she is better off learning, especially in an emergency. Anyway, this has been exhausting. Going to sleep. Lori Renee

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@lorirenee1

Hi, Lori Renee with latest update on my DRG trial. First, this trial is not for sissies. Not easy. Yesterday, I met with my pain doc and ABBOTT rep to calibrate the electricity running thru the wires at my DRG nerves. Essentially, I was given "Program 2," and after several electrical feelings running thru my feet, calves, and shins, the ABBOTT rep got what she felt might better help my pain. Well, no she did not. By evening, the ball of my left foot felt like it was in a vice. Emergency call to her, and she lowered some electricity. Within an hour, the vice softened. Today, she went back to her original "Program 1," and I am getting relief again. They try to calibrate just the right amount of electricity. Kind of like the story of "The Three Little Bears." Goldilocks finally sits on the chair that is "just right." The trial ends Monday, and till then, she tries to get it better and better. I would say that right now, I am about 40% better. If I can help one person here decide if they want to try this, I am happy. Please. More prayers coming to me. No joke. This is not for sissies. Hank, your wife would have to learn a touch of technology to do this trial. It is imperative. But you really could meet the ABBOTT tech before the trial begins, and get Linda familiar how to use the foot ipod. It is very easy. Boils down to a plus, for more electricity, and a minus, for less. A touch more complicated, but not much. Otherwise, you would have to be at each phone call, put the phone on speaker phone, and help the rep and Linda use the Ipod. Knowing you, Hank, you would do this for Linda. But she is better off learning, especially in an emergency. Anyway, this has been exhausting. Going to sleep. Lori Renee

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Hi again Lori. Hope your having good luck with the drg today. Just to say, regarding Linda and the use of technology, I think that would be a hurdle to her doing it. She has serious technophobia. Its as much physical as psychological. She is really uncoordinated with anything mechanical and she is also uncoordinated with the use of technology, which when you think about it shares some traits with mechanics. I remember when we tried a tens unit on her. Besides the fact that it didn't work very well, there was just the simple aspect of actually operating it. She did not want to do it so I did it for her. I guess she would have done it herself if it did work and it was the only way she was going to get relief. But she really hates that stuff. So that would be one major hurdle for sure. OK, gotta go fix dinner now. Hank

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