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

@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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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

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@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

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@jimhd

@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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@jimhd and of course, to all my Pain Warriors: Hi Jim, So good to hear from you! First, although the DRG is sometimes mentioned as a stimulator of last resort, that is just words. Do not become frightened of words. The DRG targets focal pain below the waist. Pain that is very specific to one spot. My DRG trial ended yesterday, and believe me, without it, my pain is amped up again. That is the real testimonial to how it worked! It is very hard to put percentages on pain. I know that I felt better with it, for sure. I know that once it is put in me, it is turned on immediately. There is no waiting for healing of the area. However, for about 2 weeks, there will be talking to ABBOTT reps again to get the electricity just right. Therefore, for a few weeks, I may not get relief as they calibrate the electricity. It also has about a 6 weeks healing time from the surgery. As we age, this is not easy. I am prepared to do everything to try and regain my strength, including physical therapy if necessary. However, I have been to physical therapy twice in the last two years, and have an arsenal of things to do at home. This is serious business. I will definitely have to do anaerobic and aerobic exercise to get fit again. As far as suicide, Jim, I understand. I have utterly no history of suicidal ideation. But PAIN so great made it happened naturally. I even know exactly what med works, if I wanted to commit the deed. I did not want to take a bottle of pills, and wake up as some sort of vegetable, although I do like vegetables very much. Especially baby French green beans. My real love of life is what stops me. My life is precious. PAIN is despairing. Remember that you have refrained from your bottle of pills. At your core, Jim, you love life, too. You just get desperate for relief. Man, do I understand. You know, that rhubarb crisp sounds delicious. I love anything with good fruit inside. I am a sucker for a good fruit pie, of any kind. My favorite. And if I eat just a taste of the crust, the calories are not too bad. My love and hopes for you on the 26th. Like I said, do not be afraid of words. They just float into the air. Even the ones inside your head; let them float away if they are not good words. Do not let them over take you. God bless, and keep us posted about your appointment. Love, Lori

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@lorirenee1

@jimhd and of course, to all my Pain Warriors: Hi Jim, So good to hear from you! First, although the DRG is sometimes mentioned as a stimulator of last resort, that is just words. Do not become frightened of words. The DRG targets focal pain below the waist. Pain that is very specific to one spot. My DRG trial ended yesterday, and believe me, without it, my pain is amped up again. That is the real testimonial to how it worked! It is very hard to put percentages on pain. I know that I felt better with it, for sure. I know that once it is put in me, it is turned on immediately. There is no waiting for healing of the area. However, for about 2 weeks, there will be talking to ABBOTT reps again to get the electricity just right. Therefore, for a few weeks, I may not get relief as they calibrate the electricity. It also has about a 6 weeks healing time from the surgery. As we age, this is not easy. I am prepared to do everything to try and regain my strength, including physical therapy if necessary. However, I have been to physical therapy twice in the last two years, and have an arsenal of things to do at home. This is serious business. I will definitely have to do anaerobic and aerobic exercise to get fit again. As far as suicide, Jim, I understand. I have utterly no history of suicidal ideation. But PAIN so great made it happened naturally. I even know exactly what med works, if I wanted to commit the deed. I did not want to take a bottle of pills, and wake up as some sort of vegetable, although I do like vegetables very much. Especially baby French green beans. My real love of life is what stops me. My life is precious. PAIN is despairing. Remember that you have refrained from your bottle of pills. At your core, Jim, you love life, too. You just get desperate for relief. Man, do I understand. You know, that rhubarb crisp sounds delicious. I love anything with good fruit inside. I am a sucker for a good fruit pie, of any kind. My favorite. And if I eat just a taste of the crust, the calories are not too bad. My love and hopes for you on the 26th. Like I said, do not be afraid of words. They just float into the air. Even the ones inside your head; let them float away if they are not good words. Do not let them over take you. God bless, and keep us posted about your appointment. Love, Lori

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Lori, how awful to have experienced relief up to as much as 50% and enjoyed feeling that relief and now to have to face until at least July 9th without it. Miserable! Linda wanted me to tell you that she understands this completely, that it's like leaving a terrible job that you absolutely HATE, and go away for two weeks on the most wonderful vacation where you are relaxed and having so much fun, and then to have to come back home and face everything again including that job! Anyway, that is her analogy to what happens when you get relief and then have to go back to the drudge. When she smokes MJ (no legal THC here) and has a nice shot of bourbon in her favorite spiked seltzer, she says she feels so buoyant that she becomes a different person, even sits up straighter. But then later (or the next day) she's right back in it. And it is such a letdown. All of this is just her way of telling you to hang in there, you will be back to the better times eventually (hopefully by 7/9) and maybe you don't have to return to the drudge. We are getting ready to have our own little party for YOU when this happen!!!. Best, Hank

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@jesfactsmon

Lori, how awful to have experienced relief up to as much as 50% and enjoyed feeling that relief and now to have to face until at least July 9th without it. Miserable! Linda wanted me to tell you that she understands this completely, that it's like leaving a terrible job that you absolutely HATE, and go away for two weeks on the most wonderful vacation where you are relaxed and having so much fun, and then to have to come back home and face everything again including that job! Anyway, that is her analogy to what happens when you get relief and then have to go back to the drudge. When she smokes MJ (no legal THC here) and has a nice shot of bourbon in her favorite spiked seltzer, she says she feels so buoyant that she becomes a different person, even sits up straighter. But then later (or the next day) she's right back in it. And it is such a letdown. All of this is just her way of telling you to hang in there, you will be back to the better times eventually (hopefully by 7/9) and maybe you don't have to return to the drudge. We are getting ready to have our own little party for YOU when this happen!!!. Best, Hank

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@jesfactsmon Hank and Linda, You guys are just so sweet!!!! You tell Linda to drink her Bourbon and Seltzer more often!!!!! At our age, what difference does it make? If she feels better, so be it!!! Hank, due to a comedy of errors that I am still trying to rectify, my surgery on July 9th was canceled. I heard it was due to insufficient payment for the surgery, to my pain doc. I think it is turning out that some goof ball entered my old health insurance into their system, and my surgery got rejected. But I am still working to figure out what the hell happened. I do not even have the strength to write the whole thing that happened, but I do know it will be rectified. I am emotionally exhausted from all this. I really need your house that you had in Hawaii, and go on a permanent vacation there. I know my surgery will actually happen. Just human carelessness at play. Thanks so much. Kiss Linda. Bye for now, Lori

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@lorirenee1

@jesfactsmon Hank and Linda, You guys are just so sweet!!!! You tell Linda to drink her Bourbon and Seltzer more often!!!!! At our age, what difference does it make? If she feels better, so be it!!! Hank, due to a comedy of errors that I am still trying to rectify, my surgery on July 9th was canceled. I heard it was due to insufficient payment for the surgery, to my pain doc. I think it is turning out that some goof ball entered my old health insurance into their system, and my surgery got rejected. But I am still working to figure out what the hell happened. I do not even have the strength to write the whole thing that happened, but I do know it will be rectified. I am emotionally exhausted from all this. I really need your house that you had in Hawaii, and go on a permanent vacation there. I know my surgery will actually happen. Just human carelessness at play. Thanks so much. Kiss Linda. Bye for now, Lori

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Lori where are you having this procedure done? You would think they would at least call you and let you know before outright cancelling you. That is ridiculous! Who are these people? That is just maddening. I hope they will straighten this out for you and get your appt. back. Ugh!!!

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@jesfactsmon Hi Hank, My surgery has been straightened out. Back to the right time, place, and coverage by my insurance. But this is only due to my persistence in straightening it out. I am having this done at Illinois Bone and Joint, in Morton Grove, Illinois, where I live. Apparently, some goof ball entered all my old insurance information into the system at the surgical center there, and the surgical center proceeded to cancel my surgery. I just happened to find this out at the exact time I was making an appointment for Covid testing. The Covid place had an incoming email about me, at the very same time I was on the phone making an appointment with them. The person making the appointment said to me, "Oh, never mind. You don't need a Covid test because your surgery was canceled." I was flabbergasted, and told her to keep my appointment for a Covid test, and I would be there. The lady at the Covid place read the email to me from the surgical center, and it said that surgery was canceled due to lack of reimbursement to my doctor, by my insurance company. I emailed my doctor thinking that he did not even bother checking my insurance coverage (which is his job, in this case.), and why in the world would he put me through a DRG trial without sufficient coverage by my insurance. His response to me was virtually senseless. I swear, Hank, he just wanted to answer me ASAP, and go on to his next poor patient. With careful thought, I put pieces together, emailed him again, and FIRMLY clarified the problem. Today, he sent me about 2 sentences, "Oh. Sorry for the confusion." He gave me back my original surgical time, date, etc. Had I not figured out what happened, God knows what would have happened with anything. Such the way of the world of fast, fast, fast, and huge technology controlling everything. However, it only takes 1 really caring human being to straighten things out. He is a really good surgeon Hank, or I would be done with him. In fact, I will most likely be done with him as soon as my DRG machine is working ok, and I am better, God willing. So that is that. I cannot tell you how nice it is to have you, Hank. A person who listens, and cares. God bless you. I think he does for sure. Lori

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@lorirenee1

@jesfactsmon Hi Hank, My surgery has been straightened out. Back to the right time, place, and coverage by my insurance. But this is only due to my persistence in straightening it out. I am having this done at Illinois Bone and Joint, in Morton Grove, Illinois, where I live. Apparently, some goof ball entered all my old insurance information into the system at the surgical center there, and the surgical center proceeded to cancel my surgery. I just happened to find this out at the exact time I was making an appointment for Covid testing. The Covid place had an incoming email about me, at the very same time I was on the phone making an appointment with them. The person making the appointment said to me, "Oh, never mind. You don't need a Covid test because your surgery was canceled." I was flabbergasted, and told her to keep my appointment for a Covid test, and I would be there. The lady at the Covid place read the email to me from the surgical center, and it said that surgery was canceled due to lack of reimbursement to my doctor, by my insurance company. I emailed my doctor thinking that he did not even bother checking my insurance coverage (which is his job, in this case.), and why in the world would he put me through a DRG trial without sufficient coverage by my insurance. His response to me was virtually senseless. I swear, Hank, he just wanted to answer me ASAP, and go on to his next poor patient. With careful thought, I put pieces together, emailed him again, and FIRMLY clarified the problem. Today, he sent me about 2 sentences, "Oh. Sorry for the confusion." He gave me back my original surgical time, date, etc. Had I not figured out what happened, God knows what would have happened with anything. Such the way of the world of fast, fast, fast, and huge technology controlling everything. However, it only takes 1 really caring human being to straighten things out. He is a really good surgeon Hank, or I would be done with him. In fact, I will most likely be done with him as soon as my DRG machine is working ok, and I am better, God willing. So that is that. I cannot tell you how nice it is to have you, Hank. A person who listens, and cares. God bless you. I think he does for sure. Lori

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Well, all's well that ends well I guess, for now anyway. Boy that is nerve wracking to say the least. You certainly didn't want to wait any longer than you absolutely had to. Hopefully things go smoothly from here on out. Take a chill pill if you have one. Or some kratom. Best, Hank

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@lorirenee1

@jesfactsmon Hi Hank, My surgery has been straightened out. Back to the right time, place, and coverage by my insurance. But this is only due to my persistence in straightening it out. I am having this done at Illinois Bone and Joint, in Morton Grove, Illinois, where I live. Apparently, some goof ball entered all my old insurance information into the system at the surgical center there, and the surgical center proceeded to cancel my surgery. I just happened to find this out at the exact time I was making an appointment for Covid testing. The Covid place had an incoming email about me, at the very same time I was on the phone making an appointment with them. The person making the appointment said to me, "Oh, never mind. You don't need a Covid test because your surgery was canceled." I was flabbergasted, and told her to keep my appointment for a Covid test, and I would be there. The lady at the Covid place read the email to me from the surgical center, and it said that surgery was canceled due to lack of reimbursement to my doctor, by my insurance company. I emailed my doctor thinking that he did not even bother checking my insurance coverage (which is his job, in this case.), and why in the world would he put me through a DRG trial without sufficient coverage by my insurance. His response to me was virtually senseless. I swear, Hank, he just wanted to answer me ASAP, and go on to his next poor patient. With careful thought, I put pieces together, emailed him again, and FIRMLY clarified the problem. Today, he sent me about 2 sentences, "Oh. Sorry for the confusion." He gave me back my original surgical time, date, etc. Had I not figured out what happened, God knows what would have happened with anything. Such the way of the world of fast, fast, fast, and huge technology controlling everything. However, it only takes 1 really caring human being to straighten things out. He is a really good surgeon Hank, or I would be done with him. In fact, I will most likely be done with him as soon as my DRG machine is working ok, and I am better, God willing. So that is that. I cannot tell you how nice it is to have you, Hank. A person who listens, and cares. God bless you. I think he does for sure. Lori

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@lorirenee1 Excuse me for butting in but, good for you Lori! Prime example of being our own advocate. Way to go! People in pain don't really need extra rollercoaster rides but, it happens and we have to keep persevering for our benefit. Bring on July 9th!!

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@rwinney @jesfactsmon Rachel, you are never butting in. You are utterly tops at being your own advocate, but have that gracious, kind ability to manage to really listen and help others. Both you and Hank. Two great gems. Fine people. Through this journey, I have found true, strong, kindness. This is the real joy for me. Hang tough, and try to have the best day you can, Rachel. Hank, you are perfection. Just pure perfection. Going to try going out, and doing one small task. I have to regain strength for the surgery ahead. Like I said; not for sissies!!!! Love, Lori

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@jesfactsmon

Well, all's well that ends well I guess, for now anyway. Boy that is nerve wracking to say the least. You certainly didn't want to wait any longer than you absolutely had to. Hopefully things go smoothly from here on out. Take a chill pill if you have one. Or some kratom. Best, Hank

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@jesfactmon @rwinney Yes, all is well that ends well. But ya gotta watch these insurance companies and doctors like a hawk. The scarey part, is what if I had dementia, or was in an ice cream induced coma, and could not advocate for myself? I am sure there are so many mishaps that cause such harm to people's lives. And yes, just took my Kratom. Seriously thinking of donating my time to Kratom advocacy. The plant saves people. Love to you guys, always. Lori

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@lorirenee1

@jesfactmon @rwinney Yes, all is well that ends well. But ya gotta watch these insurance companies and doctors like a hawk. The scarey part, is what if I had dementia, or was in an ice cream induced coma, and could not advocate for myself? I am sure there are so many mishaps that cause such harm to people's lives. And yes, just took my Kratom. Seriously thinking of donating my time to Kratom advocacy. The plant saves people. Love to you guys, always. Lori

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Yes imagine all of the poor souls in nursing homes who are without advocates, often because their spouse and family are gone or are also too infirm to help. It's a tragedy. But it happens a lot. Sad. But glad you are back on track Lori!

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