1. < Neuropathy

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

Interested in more discussions like this? Go to the Neuropathy Support Group.

lorirenee1 | @lorirenee1 | Jun 21, 2020
In reply to @jesfactsmon "Hi again Lori. Hope your having good luck with the drg today. Just to say, regarding..." + (show)
@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

Jump to this post

@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

REPLY
1 reply
Hank | @jesfactsmon | Jun 21, 2020
In reply to @lorirenee1 "@jesfactsmon Hi Hank, I do understand about Linda. I had to get over huge techno phobia..." + (show)
@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

Jump to this post

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

REPLY
1 reply
lorirenee1 | @lorirenee1 | Jun 21, 2020
In reply to @jesfactsmon "It will be great to hear that you have real true success in reducing your pain..." + (show)
@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

Jump to this post

@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

REPLY
lorirenee1 | @lorirenee1 | Jun 22, 2020

@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.)

REPLY
3 replies
Mentor
Rachel, Volunteer Mentor | @rwinney | Jun 22, 2020
In reply to @lorirenee1 "@rwinney @jesfactsmon And all my fellow Neuropathy Warriors; My DRG trial is over. Because my pain..." + (show)
@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.)

Jump to this post

@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.

REPLY
2 replies
Mentor
Rachel, Volunteer Mentor | @rwinney | Jun 22, 2020
In reply to @rwinney "@lorirenee1 Awesome! You made your decision!! I'm so happy about this for you. Interesting facts about..." + (show)
@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.

Jump to this post

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

REPLY
lorirenee1 | @lorirenee1 | Jun 22, 2020
In reply to @rwinney "@lorirenee1 Awesome! You made your decision!! I'm so happy about this for you. Interesting facts about..." + (show)
@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.

Jump to this post

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

REPLY
Mentor
Jim, Volunteer Mentor | @jimhd | Jun 22, 2020
In reply to @lorirenee1 "@rwinney @jesfactsmon And all my fellow Neuropathy Warriors; My DRG trial is over. Because my pain..." + (show)
@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.)

Jump to this post

@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

REPLY
1 reply
Hank | @jesfactsmon | Jun 23, 2020
In reply to @lorirenee1 "@rwinney @jesfactsmon And all my fellow Neuropathy Warriors; My DRG trial is over. Because my pain..." + (show)
@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.)

Jump to this post

A miracle scenario would be nice. But if nothing else I hope you get at least a 50% benefit in pain reduction from this (more would be great of course) and that it lasts for years if not forever. I agree with Jim, the only thing that is really the last resort is checking oneself out of here permanently. I wish you the very best luck in the world Lori, with both the DRG stimulator as well as the desipramine. Best wishes always! Hank

REPLY
lorirenee1 | @lorirenee1 | Jun 23, 2020

@jesfactsmon Hi Hank, Thanks so much for such good listening. You really do listen well! My surgery is scheduled for July 9th, and I say, "Bring it on!" Then, regaining strength will be my next goal. Gonna go now. Gotta rest. Still recouperating here! Love to you and Linda, Lori

REPLY
View MoreView Less
Please sign in or register to post a reply.