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

@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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@jesfactsmon

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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@jesfactsmon Hi Hank, I do understand about Linda. I had to get over huge techno phobia when I was a teacher, or get fired. I became a totally self taught computer person, and my skills lagged behind younger teachers. However, I did it. As far as Linda, the gadget I use now, is literally, pushing buttons. Nothing else. Picture a grid. Left foot, right foot. Then, areas of the foot that hurt, listed below each of the feet. For me, it becomes left foot, right foot, balls of feet, toes. Four areas to the grid. Push button for right foot. Push button to amp up electricity to the toes or balls of feet, or lower it down. Same with left foot. If I do this thing, I hear that the real foot ipad is even easier. Linda could meet with the ABBOTT person AHEAD of time, before she does anything, and see if she can get past herself with being able to use the Foot Ipads. For this to stop her would be a travesty to her life. If this machine really helped her, she would have life again!!!! Hope this helps! Lori

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@lorirenee1

@jesfactsmon Hi Hank, I do understand about Linda. I had to get over huge techno phobia when I was a teacher, or get fired. I became a totally self taught computer person, and my skills lagged behind younger teachers. However, I did it. As far as Linda, the gadget I use now, is literally, pushing buttons. Nothing else. Picture a grid. Left foot, right foot. Then, areas of the foot that hurt, listed below each of the feet. For me, it becomes left foot, right foot, balls of feet, toes. Four areas to the grid. Push button for right foot. Push button to amp up electricity to the toes or balls of feet, or lower it down. Same with left foot. If I do this thing, I hear that the real foot ipad is even easier. Linda could meet with the ABBOTT person AHEAD of time, before she does anything, and see if she can get past herself with being able to use the Foot Ipads. For this to stop her would be a travesty to her life. If this machine really helped her, she would have life again!!!! Hope this helps! Lori

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It will be great to hear that you have real true success in reducing your pain dramatically. Hope to keep hearing good things about your DRG. The last trial day is tomorrow and then you will decide whether to go ahead I guess. Fingers crossed my dear! Hank

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@jesfactsmon

It will be great to hear that you have real true success in reducing your pain dramatically. Hope to keep hearing good things about your DRG. The last trial day is tomorrow and then you will decide whether to go ahead I guess. Fingers crossed my dear! Hank

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@jesfactsmon Hi Hank, DRG rollercoaster here. Last night, no pain at all. Today, pain level at about 4-5, out of 10, throughout the day. 4-5 sure beats a 10. That is where I am most of the time today. ABBOTT lady was supposed to call today to remove 2 leads, to see how I would do without them. Everything removed tomorrow, and she never called, even with me leaving her a message. This is not the up to 80% relief, as advertised. But I am taking half the Kratom today, that I normally take. Like I said, yesterday, was pain free. I have utterly no idea what to do. Doc says sometimes without the DRG, people realize just how much it helped, compared to being without it. The thought of being at a level 9 or 10, all day, every day, is more than I can imagine. Not a life. Stay tuned. This really sucks, but I am trying to be hopeful? Got to talk to God. That helps sometimes. And listen to great music. Being my warrior self, I just walked for 10 minutes. Have to stay strong at least. Will post when I know more. Thanks so much, Hank. Lori

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@rwinney @jesfactsmon And all my fellow Neuropathy Warriors; My DRG trial is over. Because my pain lowered by about 50 % and the general mobility of my feet got better by about 60% (that means I don't feel as much like the balls of my feet are made of concrete, and I can wiggle my toes!), my real implant of the DRG is scheduled for July 9. It is not a perfect solution, but will keep me from searching ways to do myself in. I could only tell you guys this so bluntly. But pain does get this bad. One thing I learned. Insurance companies do not cover this procedure without about 50% improvement in pain. Another useful/interesting thing, (Rachel, you will like this), the Pain doc said that after my surgery there will be about 2-3 weeks that the ABBOTT people will be again, calibrating the electricity. In this time, you RETRAIN YOUR BRAIN. There is so much out there about retraining the brain, and I guess electricity to nerves in your DRG is an extreme way to retrain it. You really don't read about this in DRG literature! Also, my fellow Pain warriors, there is a correlation between how long a person has been in pain, and how well the DRG stimulator works; ie., the longer your pain, the less chance for the DRG to be effective. But who the hell would pick this as a first choice? And then, time marches on. Now, I have no battery hook up, no wires installed. Just me, eating chocolate chip ice cream for comfort. No intense pain yet without the DRG stimulator. Would it not me a true miracle if it just never comes back? Do we believe in miracles???? I think I am due for a second scoop of ice cream…..Love to each and every one of you. Lori (Oh and by the way, no pain taking wires outta me. Felt nothing, and took seconds.)

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@lorirenee1

@rwinney @jesfactsmon And all my fellow Neuropathy Warriors; My DRG trial is over. Because my pain lowered by about 50 % and the general mobility of my feet got better by about 60% (that means I don't feel as much like the balls of my feet are made of concrete, and I can wiggle my toes!), my real implant of the DRG is scheduled for July 9. It is not a perfect solution, but will keep me from searching ways to do myself in. I could only tell you guys this so bluntly. But pain does get this bad. One thing I learned. Insurance companies do not cover this procedure without about 50% improvement in pain. Another useful/interesting thing, (Rachel, you will like this), the Pain doc said that after my surgery there will be about 2-3 weeks that the ABBOTT people will be again, calibrating the electricity. In this time, you RETRAIN YOUR BRAIN. There is so much out there about retraining the brain, and I guess electricity to nerves in your DRG is an extreme way to retrain it. You really don't read about this in DRG literature! Also, my fellow Pain warriors, there is a correlation between how long a person has been in pain, and how well the DRG stimulator works; ie., the longer your pain, the less chance for the DRG to be effective. But who the hell would pick this as a first choice? And then, time marches on. Now, I have no battery hook up, no wires installed. Just me, eating chocolate chip ice cream for comfort. No intense pain yet without the DRG stimulator. Would it not me a true miracle if it just never comes back? Do we believe in miracles???? I think I am due for a second scoop of ice cream…..Love to each and every one of you. Lori (Oh and by the way, no pain taking wires outta me. Felt nothing, and took seconds.)

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@lorirenee1 Awesome! You made your decision!! I'm so happy about this for you. Interesting facts about the length of pain and effectiveness of the implant. I agree, who would pick the stimulator as early choice? Not me. Alright…heres to July 9th! 😃 or a possible miracle. Hey, you never know.

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@rwinney

@lorirenee1 Awesome! You made your decision!! I'm so happy about this for you. Interesting facts about the length of pain and effectiveness of the implant. I agree, who would pick the stimulator as early choice? Not me. Alright…heres to July 9th! 😃 or a possible miracle. Hey, you never know.

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Oh, and retrain the brain…famous last words these days.

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@rwinney

@lorirenee1 Awesome! You made your decision!! I'm so happy about this for you. Interesting facts about the length of pain and effectiveness of the implant. I agree, who would pick the stimulator as early choice? Not me. Alright…heres to July 9th! 😃 or a possible miracle. Hey, you never know.

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@rwinnney Hi Rachel, So glad to share my news! It will definitely help. Not perfect, but way better. Love to you, Lori

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@lorirenee1

@rwinney @jesfactsmon And all my fellow Neuropathy Warriors; My DRG trial is over. Because my pain lowered by about 50 % and the general mobility of my feet got better by about 60% (that means I don't feel as much like the balls of my feet are made of concrete, and I can wiggle my toes!), my real implant of the DRG is scheduled for July 9. It is not a perfect solution, but will keep me from searching ways to do myself in. I could only tell you guys this so bluntly. But pain does get this bad. One thing I learned. Insurance companies do not cover this procedure without about 50% improvement in pain. Another useful/interesting thing, (Rachel, you will like this), the Pain doc said that after my surgery there will be about 2-3 weeks that the ABBOTT people will be again, calibrating the electricity. In this time, you RETRAIN YOUR BRAIN. There is so much out there about retraining the brain, and I guess electricity to nerves in your DRG is an extreme way to retrain it. You really don't read about this in DRG literature! Also, my fellow Pain warriors, there is a correlation between how long a person has been in pain, and how well the DRG stimulator works; ie., the longer your pain, the less chance for the DRG to be effective. But who the hell would pick this as a first choice? And then, time marches on. Now, I have no battery hook up, no wires installed. Just me, eating chocolate chip ice cream for comfort. No intense pain yet without the DRG stimulator. Would it not me a true miracle if it just never comes back? Do we believe in miracles???? I think I am due for a second scoop of ice cream…..Love to each and every one of you. Lori (Oh and by the way, no pain taking wires outta me. Felt nothing, and took seconds.)

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@lorirenee1 Awesome!! I remember how wonderful it felt when I had the scs trial. I think that it was 80% improvement for me. I'd forgotten how it felt to have that low level pain. After my implant I had to wait for several weeks before the rep turned the stimulator on, because it doesn't work to do it until the scar tissue is healed. I wonder if that's not an issue with the DRG.

You know what I've been through with severe major depression and suicidal ideation. That was before the pn started, so I wasn't having to deal with chronic pain that never stops. Every night, after I set out my morning pills and take the bedtime ones, I have a conscious thought: "You closed the medicine cabinet without taking an overdose. Good decision." Let me tell you, there are nights when I really want to take a whole bottle full of pain medication. I haven't acted on it for 2 or 3 years.

Congratulations on sticking with it, even though you weren't sure the DRG would work. Dealing with a 50% pain reduction will be less stressful to manage.

I'm seeing the neurospecialist on the 26th to talk about the DRG. Having you do a demo is going to help me with the decision. She told me at my appointment last fall that she wanted me to pursue every option before going ahead with the DRG, because she said it's a last resort treatment. Not sure if I like that, and not sure if I agree with her.

Have a restful night. No chocolate chip ice cream for me, but I'm enjoying the rhubarb crisp my wife made me for father's day. Tonight I'm going to put sliced and sugared strawberries and heavy cream on it. Yum.

I believe in miracles. Wouldn't this be a great time to experience one!

Jim

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