Peripheral nerve stimulators

Posted by sparshall @sparshall, Jan 14, 2020

This is a long shot, but I’m looking for people who have used implanted peripheral nerve stimulators (PNS) to control nerve pain. They block the pain signal to the brain. Stimrouter and Stimwave are major brands. These are NOT the same thing as spinal cord stimulators, of which there are many brands. I’m about to have a Stimwave implanted to block intractable pelvic and leg nerve pain.

@rwinney

@ jesfactsmon I do relate to Linda's outing filled with joyful emotion, adaptation and maybe some anxiety? I am incredibly happy she made it out of the house, in the car and to a market. This was a big day for her (and you)! It is burdensome that we pay the price for simple pleasures when we live with neuropathy, fibromyalgia, chronic pain disorders, etc…

I gave up driving last December at the height of my debilitating pains. Pain made me reclusive and I did not like it but I grew comfortable. I became afraid of igniting more pain by leaving my house. I became at odds with riding in a car with various discomforts and pains, from movement and jarring, to sound and lights. I developed anxiety from all of it. I knew I had to force myself out of my safe zone to find whatever normalcy was going to mean for me. Every time I pushed to go out, I paid a price but knew it was mentally healthy to tackle and accomplish, even if it meant I was bed ridden after and down for the day or night. Never did I like any of it and still don't. I'd get quite resentful that the bad presented, which means I lost focus of the good that presented. Mindfulness…always a student.

After a long winter of this, I started to believe my body was shutting down from lack of use. It's stated that excercise, movement, stretching is relevant to neuropathy. Practicing yoga or tai chi is beneficial and must be done as tolerated but, still done. Well, I did minimal stretching and that's about it. By April I mysteriously started to feel let up in certain places (maybe from myofacial release, maybe spring was in the air, maybe supplements kicked in, maybe the stars alligned). My point is I pushed little by little, in and out of pain and realized with every movement, like planting a flower pot, I was completely over stimulating my muscles. Bending to pull a weed set my legs on fire. I'm now able to do a smidge better with a bit less pain and I'm happy for that. I made my first drive in the spring as well. It was nerve wracking. I felt out of sorts and my body wondered what the hell I was doing! I had tried before but my body went nuts. So, there is my small progress…I drive maybe once or twice a week, 5 – 10 minutes max to one small destination like CVS. Sometimes I still put the car in park at a light to save my leg. It feels wonderful to have that independence back and I listen to my body when I cant do it. Many days the legs put me down without choice.

I've babbled too long. I just hope Linda knows I feel her frustration, sympathize with her pain and rejoice in her happy moments of which I hope will become more often. I hope she is motivated still, somewhere inside, to keep her fight and not let her feet win completely. I'm impressed with her day and hope more can be had. How about a portable wheel chair for the next grocery trip? Be well Hank and Linda. All the best to you both.
Rachel

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Hi Rachel, please forgive the length of what follows. I don't know why I didn't just do one encompassing response to you and Lori together, should have. But anyway, yeah, the driving thing. I admire that you are not giving up, that is really good. Keep doing it as you are. I think Linda is at the point where she just can't do it. Her reaction time seems to be not great now. And that makes her hyper nervous to be a driver. She last drove the car on a short local drive last year, possibly August or Sept. Since she rarely leaves our condo now and since I am always around anyway there is no need for her to drive really. But this deterioration of her overall condition this past year has our attention. I also hear you about exercising. Whatever you can do to get yourself to do. It ain't easy that is for sure. I do wish she would push a little more to do some. Easy for me to say, most days she just doesn't have the extra energy for doing any. I got her this vibration machine about a year ago that she stands (or sits) on and it moves around forcing her muscles to compensate for the different positions it puts you in. Even that is hard sometimes. She also tries to do these videos by Marie Esmonde-White. She does these half hour shows of basically body movements and stretches, lots of stretching. Very good actually. I can't do them myself because Marie tends to talk a lot (mostly about nothing) and I get annoyed after a while. Even with the sound off I see her mouth moving constantly and it is distracting. Rachel, you amaze me with what you deal with, shoulders head and neck issues; and then the legs! The legs seem like the worst. We have a wheelchair from Linda's Aunt who passed in 2010 but I hope we can do without that for a long time. So far Linda can walk thank god.

Oh, one thing Lori @lorirenee1 asked is when Linda last saw a neurologist. That would be never. She got the neuropathy 2 days after her last chemo infusion in 2014 and because it wasn't horrible at first we just kind of relied on learning about it online. Anyway at that time we had bigger fish to fry, i.e. we were trying to figure out a way for her to lick cancer without chemo or radiation. We figured that one out in August of 2015 (after her last cancer outbreak that year) with the discovery of something called Haelan 951 (Google it if interested) and cancer is no longer an issue. And we haven't thought about a neurologist because Linda thought "What is a neurologist going to fo? It's obvious I have neuropathy" so she's been coping with it best she can and I retired in 2016 to be her caregiver to whatever extent she needs.. So there you go. Neither of us put a lot of trust in doctors. And Linda does not do well with drugs anyway and we both believe in just living a healthy lifestyle as much as possible. And of course there is Faith. That underpins everything. Ugh! I know what you mean about going on too long. Sorry. Thanks for your post Rachel, you're the best. Hank

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@jesfactsmon

Hi Rachel, please forgive the length of what follows. I don't know why I didn't just do one encompassing response to you and Lori together, should have. But anyway, yeah, the driving thing. I admire that you are not giving up, that is really good. Keep doing it as you are. I think Linda is at the point where she just can't do it. Her reaction time seems to be not great now. And that makes her hyper nervous to be a driver. She last drove the car on a short local drive last year, possibly August or Sept. Since she rarely leaves our condo now and since I am always around anyway there is no need for her to drive really. But this deterioration of her overall condition this past year has our attention. I also hear you about exercising. Whatever you can do to get yourself to do. It ain't easy that is for sure. I do wish she would push a little more to do some. Easy for me to say, most days she just doesn't have the extra energy for doing any. I got her this vibration machine about a year ago that she stands (or sits) on and it moves around forcing her muscles to compensate for the different positions it puts you in. Even that is hard sometimes. She also tries to do these videos by Marie Esmonde-White. She does these half hour shows of basically body movements and stretches, lots of stretching. Very good actually. I can't do them myself because Marie tends to talk a lot (mostly about nothing) and I get annoyed after a while. Even with the sound off I see her mouth moving constantly and it is distracting. Rachel, you amaze me with what you deal with, shoulders head and neck issues; and then the legs! The legs seem like the worst. We have a wheelchair from Linda's Aunt who passed in 2010 but I hope we can do without that for a long time. So far Linda can walk thank god.

Oh, one thing Lori @lorirenee1 asked is when Linda last saw a neurologist. That would be never. She got the neuropathy 2 days after her last chemo infusion in 2014 and because it wasn't horrible at first we just kind of relied on learning about it online. Anyway at that time we had bigger fish to fry, i.e. we were trying to figure out a way for her to lick cancer without chemo or radiation. We figured that one out in August of 2015 (after her last cancer outbreak that year) with the discovery of something called Haelan 951 (Google it if interested) and cancer is no longer an issue. And we haven't thought about a neurologist because Linda thought "What is a neurologist going to fo? It's obvious I have neuropathy" so she's been coping with it best she can and I retired in 2016 to be her caregiver to whatever extent she needs.. So there you go. Neither of us put a lot of trust in doctors. And Linda does not do well with drugs anyway and we both believe in just living a healthy lifestyle as much as possible. And of course there is Faith. That underpins everything. Ugh! I know what you mean about going on too long. Sorry. Thanks for your post Rachel, you're the best. Hank

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@jesfactsmon Good morning. Thank you for your reply. You 2 sure have been through the wringer. There is so much to each person's story, once you dig in, and I'm very impressed by Linda's courage and tenacity to keep going. She has been through alot and I can feel, she is a survivor. And you, riding shot gun, takes tenacity, love and dedication. I commend you both. I'm happy to hear Linda does the best she can with movement. That is a big part of the Mayo program….to find each persons speed. I hear you on the Neurologist bit, what can they do typically but prescribe pills and provide procedures. Linda's dealings with so many Drs overtime surely warrants her dismay to see another. I'm glad you've found Connect and can learn from others to give you some insight. Here's hoping for another beautiful day for you and Linda (don't forget the flowers!). I had a surprisingly good day yesterday and staying positive for another. Be well.

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@rwinney

@jesfactsmon Good morning. Thank you for your reply. You 2 sure have been through the wringer. There is so much to each person's story, once you dig in, and I'm very impressed by Linda's courage and tenacity to keep going. She has been through alot and I can feel, she is a survivor. And you, riding shot gun, takes tenacity, love and dedication. I commend you both. I'm happy to hear Linda does the best she can with movement. That is a big part of the Mayo program….to find each persons speed. I hear you on the Neurologist bit, what can they do typically but prescribe pills and provide procedures. Linda's dealings with so many Drs overtime surely warrants her dismay to see another. I'm glad you've found Connect and can learn from others to give you some insight. Here's hoping for another beautiful day for you and Linda (don't forget the flowers!). I had a surprisingly good day yesterday and staying positive for another. Be well.

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A survivor definitely! Thanks for the reminder on the flowers, I'm so spacey. Well, off to deliver blood for the Red Cross. L8R. Hank

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@jesfactsmon

Hi Lori, I think Linda's driving issues (started in 1983-4 or thereabouts) were attributed by us to fibro after we knew about her fibro, but learning about the existence of the condition Central Sensitization lately in discussions with you and Rachel not long ago makes us both factor that into the equation. She is and has been super sensitive to pretty much everything her whole life or certainly since we've been married. And when she was younger and more able to cope it was not a problem. Now that her body seems to be weakening it's becoming a problem. Especially noticeable since about April of '19. I mark it to after she took a steroid for a sinus issue, perhaps in March-ish of '19. She got her first severe itch problem maybe in April? It was bad for a while, quite bad. After a few months it seemed to be less of a problem. But her energy is taking a hit from the endless foot burning. Never stops but varies between a 2-3 level sometimes to 7-9 most of the time or maybe 65% of the time. Thank god she sleeps! That is a saving grace. Lori I think you are dealing with much more pain than Linda is (and that is saying something). When you describe your situation it boggles my mind. I am SO HOPEFUL for you and the drg install you are trying. My fervent hope is that you keep the 40% relief and get even more, much more after you have the actual installation assuming you do. I hope something like this can help Linda. I am dubious only because she is so sensitive that things that might help a regular person can backfire bigtime for her. So many things that other people recommend because it has benefitted them seem to do the opposite for her. She is just getting ready for bed (I just got up -we tag team – long story) but tomorrow I will read her your post with your suggestion to talk and let you know. You are a very good lady Lori. It's hard to believe so many fine people are having to cope and deal with SO MUCH just to be able to jst do the basics and live their lives. Sheesh! I appreciate this website so much as it really helps in so many ways to have it. Thanks my friend, will be in touch. Hank

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@jesfactsmon @rwinney Hi, Hank and Rachel, Just read your most recent posts, and what we all go through just to survive one day astounds me. Just to drive a car for a bit, just to pull a weed….the determination of the human spirit, is all I can say. Rachel, you are just such a survivor. I know you agonize, but you do utterly everything to survive. You are awesome. Just awesome. You amaze me. Linda tries so hard. She is like a delicate flower. Hank, I do think, for whatever it is worth, and I may be wrong, that Linda should at least see a neurologist. Maybe something has been missed, and her condition is worsening. Maybe if only for blood tests. Neurologists do blood tests specific to neuropathy. The problem is, there isn't much treatment at all. But just in case something has been missed. Maybe it is time. I also think that maybe Linda needs evaluation for physical therapy. Maybe a one hour intake evaluation, to see if anything can be done. Has Linda been on elavil? That can help symptoms of the fibromyalgia. After my breast cancer surgery, I was not regaining strength very well. This was even before my neuropathy set in. My doctor insisted that I do physical therapy, and once the neuropathy set in, I swear, the physical therapy gave me enough strength in especially my legs, to at least be able to walk well. All through my neuropathy, I get very pissed off. I release my anger by walking. Sometimes, the greater the pain, the more I walk. I am so thankful to do this, and I know I could not with the original Physical therapy. Please, Hank, have Linda get assessed. As I write, I am thinking of Rachel. I know Rachel does everything she can to do her best. I would like Linda to do even more. I know Hank, that only you see Linda, and know how hard she tries. I hope I am not out of line. I am assessing based on what you write, and want the best for her. One other thing, Hank. I used to get terrible sinus infections many years ago. The doctor once prescribed a steroid inhaler for the sinus infection, and I wound up with major Panic attacks from the inhaler!!!! A very good doctor recognized this, put me on Xanax, and panic attack symptoms went away. He also prescribed an herbal product from the Nature's Sunshine Company, called ALJ. It is currently marketed as "Seasonal Allergy," formerly ALJ. If I get a headache around the bridge of my nose, I only take ALJ. You can get it on line. Just type in ALJ, or Nature's Sunshine Company. I have recommended this product to 2 people. Both managed not to have sinus surgery by using it. I want the best for Linda. She definitely, like Rachel and I, has Central Sensitization. Rachel, LInda, and I are like delicate flowers that pack a punch!!!! OY!!! Life is so precious. Life is so fragile. That is why I can gluttonize on Chocolate Chip ice cream. Sometimes ya gotta do, what ya gotta do. Hank, if you want to talk on the phone, or whatever, let me know. You too, Rachel. I am here for you guys. Hang in. With love, Lori

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@lorirenee1

@jesfactsmon @rwinney Hi, Hank and Rachel, Just read your most recent posts, and what we all go through just to survive one day astounds me. Just to drive a car for a bit, just to pull a weed….the determination of the human spirit, is all I can say. Rachel, you are just such a survivor. I know you agonize, but you do utterly everything to survive. You are awesome. Just awesome. You amaze me. Linda tries so hard. She is like a delicate flower. Hank, I do think, for whatever it is worth, and I may be wrong, that Linda should at least see a neurologist. Maybe something has been missed, and her condition is worsening. Maybe if only for blood tests. Neurologists do blood tests specific to neuropathy. The problem is, there isn't much treatment at all. But just in case something has been missed. Maybe it is time. I also think that maybe Linda needs evaluation for physical therapy. Maybe a one hour intake evaluation, to see if anything can be done. Has Linda been on elavil? That can help symptoms of the fibromyalgia. After my breast cancer surgery, I was not regaining strength very well. This was even before my neuropathy set in. My doctor insisted that I do physical therapy, and once the neuropathy set in, I swear, the physical therapy gave me enough strength in especially my legs, to at least be able to walk well. All through my neuropathy, I get very pissed off. I release my anger by walking. Sometimes, the greater the pain, the more I walk. I am so thankful to do this, and I know I could not with the original Physical therapy. Please, Hank, have Linda get assessed. As I write, I am thinking of Rachel. I know Rachel does everything she can to do her best. I would like Linda to do even more. I know Hank, that only you see Linda, and know how hard she tries. I hope I am not out of line. I am assessing based on what you write, and want the best for her. One other thing, Hank. I used to get terrible sinus infections many years ago. The doctor once prescribed a steroid inhaler for the sinus infection, and I wound up with major Panic attacks from the inhaler!!!! A very good doctor recognized this, put me on Xanax, and panic attack symptoms went away. He also prescribed an herbal product from the Nature's Sunshine Company, called ALJ. It is currently marketed as "Seasonal Allergy," formerly ALJ. If I get a headache around the bridge of my nose, I only take ALJ. You can get it on line. Just type in ALJ, or Nature's Sunshine Company. I have recommended this product to 2 people. Both managed not to have sinus surgery by using it. I want the best for Linda. She definitely, like Rachel and I, has Central Sensitization. Rachel, LInda, and I are like delicate flowers that pack a punch!!!! OY!!! Life is so precious. Life is so fragile. That is why I can gluttonize on Chocolate Chip ice cream. Sometimes ya gotta do, what ya gotta do. Hank, if you want to talk on the phone, or whatever, let me know. You too, Rachel. I am here for you guys. Hang in. With love, Lori

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Thanks Lori, what friendship! OK, so I have to bring Linda up to date on these posts since yesterday by you guys. Then we will discuss everything and I'll let you know the outcome of that. She is her own person with a will much stronger than mine so it's all up to her. That said, I appreciate you and she does too, she loves hearing all that you guys have to say. Will post again when I can (got a busy couple of days here today & tomorrow). Best, Hank

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@lorirenee1

@jesfactsmon @rwinney Hi, Hank and Rachel, Just read your most recent posts, and what we all go through just to survive one day astounds me. Just to drive a car for a bit, just to pull a weed….the determination of the human spirit, is all I can say. Rachel, you are just such a survivor. I know you agonize, but you do utterly everything to survive. You are awesome. Just awesome. You amaze me. Linda tries so hard. She is like a delicate flower. Hank, I do think, for whatever it is worth, and I may be wrong, that Linda should at least see a neurologist. Maybe something has been missed, and her condition is worsening. Maybe if only for blood tests. Neurologists do blood tests specific to neuropathy. The problem is, there isn't much treatment at all. But just in case something has been missed. Maybe it is time. I also think that maybe Linda needs evaluation for physical therapy. Maybe a one hour intake evaluation, to see if anything can be done. Has Linda been on elavil? That can help symptoms of the fibromyalgia. After my breast cancer surgery, I was not regaining strength very well. This was even before my neuropathy set in. My doctor insisted that I do physical therapy, and once the neuropathy set in, I swear, the physical therapy gave me enough strength in especially my legs, to at least be able to walk well. All through my neuropathy, I get very pissed off. I release my anger by walking. Sometimes, the greater the pain, the more I walk. I am so thankful to do this, and I know I could not with the original Physical therapy. Please, Hank, have Linda get assessed. As I write, I am thinking of Rachel. I know Rachel does everything she can to do her best. I would like Linda to do even more. I know Hank, that only you see Linda, and know how hard she tries. I hope I am not out of line. I am assessing based on what you write, and want the best for her. One other thing, Hank. I used to get terrible sinus infections many years ago. The doctor once prescribed a steroid inhaler for the sinus infection, and I wound up with major Panic attacks from the inhaler!!!! A very good doctor recognized this, put me on Xanax, and panic attack symptoms went away. He also prescribed an herbal product from the Nature's Sunshine Company, called ALJ. It is currently marketed as "Seasonal Allergy," formerly ALJ. If I get a headache around the bridge of my nose, I only take ALJ. You can get it on line. Just type in ALJ, or Nature's Sunshine Company. I have recommended this product to 2 people. Both managed not to have sinus surgery by using it. I want the best for Linda. She definitely, like Rachel and I, has Central Sensitization. Rachel, LInda, and I are like delicate flowers that pack a punch!!!! OY!!! Life is so precious. Life is so fragile. That is why I can gluttonize on Chocolate Chip ice cream. Sometimes ya gotta do, what ya gotta do. Hank, if you want to talk on the phone, or whatever, let me know. You too, Rachel. I am here for you guys. Hang in. With love, Lori

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@lorirenee1 YOU ROCK!!!! 😇

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@rwinney @jesfactsmon You guys are the best. Just read both your posts. To show how ludicrous life can be, I just microwaved a small glass bowl of glass noodles. And speaking of glass, the glass bowl exploded in my hand when I took it out of the microwave. Shards of glass everywhere, surrounded by 4 curious cats, and 1 five year old grandson, Noah. Here I am, wired inside, battery on my back, surrounded by glass. I literally squatted down on these still strong legs of mine, and cleaned up as best I could. Used my fucked up feet to push glass to my hardwood floors, squatted down, and got the rest up. It was either that, or call my husband to come home from work, and clean up. I thought that might be too long to wait, with glass everywhere. I never bent down. Not to do that with the wires in my back. I squatted. If these wires inside me have not become totally screwed up, it will be a miracle…….just, OH MY GOD!!!!! Love, Lori Renee

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@lorirenee1

@rwinney @jesfactsmon You guys are the best. Just read both your posts. To show how ludicrous life can be, I just microwaved a small glass bowl of glass noodles. And speaking of glass, the glass bowl exploded in my hand when I took it out of the microwave. Shards of glass everywhere, surrounded by 4 curious cats, and 1 five year old grandson, Noah. Here I am, wired inside, battery on my back, surrounded by glass. I literally squatted down on these still strong legs of mine, and cleaned up as best I could. Used my fucked up feet to push glass to my hardwood floors, squatted down, and got the rest up. It was either that, or call my husband to come home from work, and clean up. I thought that might be too long to wait, with glass everywhere. I never bent down. Not to do that with the wires in my back. I squatted. If these wires inside me have not become totally screwed up, it will be a miracle…….just, OH MY GOD!!!!! Love, Lori Renee

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Holy cow! I hope you are doing OK and were not injured. Microwaves scare me sometimes. I know how you feel though. The last thing you were prepared for in that moment happened. Comedy of errors. My sympathies Kiddo.

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@jesfactsmon

Holy cow! I hope you are doing OK and were not injured. Microwaves scare me sometimes. I know how you feel though. The last thing you were prepared for in that moment happened. Comedy of errors. My sympathies Kiddo.

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@jesfactsmon Hi Hank, If I start broadcasting Radio Free Europe through my wires, I know that I am really screwed up. Ya know; life just happens. But so far so good. No glass injuries. Just a touch of gentle throbbing in the balls of my feet…just sent you a private message here to be facebook friends. Look for it in your private messages….Lori

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@fredjan2016

I completed my Nalu peripheral nerve stimulator trial and, in short, it was successful. Immediately after they installed the wires, I was able to walk around the house for over 30 minutes. Over the next three days I could walk an hour and only have mild pain in my feet. A lot better than two minutes. On the fourth day I started having small electrical shocks in my right heel. I could only walk for 5 minutes. My left foot was fine, but my right foot would start hurting. The Nalu rep said the wires in my right leg must have moved slightly. On the seventh day the doctor removed the wires. The next day and since then I have missed the stimulators. So, my surgery is scheduled later in May to install the stimulator permanently.

The stimulators allowed me to stand and walk, but I still had the burning sensation in my feet. I had to continue taking the pain medication for the burning, but I can walk again. Potentially, a huge improvement in my quality of life.

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@fredjan2016 Hi Fred, you mentioned on June 14th that your permanent install of the Nalu stimulator was "later in May" but I think you might have meant later in June? Just trying to keep track of this as my wife and I are curious as to how well it works for you after you have it put in. Hope all is well. I hope the wait is not too crazy-making for you, I bet you'll be glad to have this done. When you had the trial you had said that the main benefit was that you could walk more easily but that you still had the burning in your feet. Did you get any reduction in your pain level? Just curious. Look forward to hearing how you do. Best, Hank

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I hope you like the stimwave better than I did. I'm having mine taken out. I had it a year ago. I followed rules for 3 mos and got so frustrated that I just quit using it. It advertises wireless. That's a laugh! it may be inside you but you still have to rely on a battery that you have to keep charged. I had everything tested a couple different times.and it showed everything was working ok, but I could not get the antenna to connect to the end of the lead. Rarely could I find the pulse even when I put it on the highest it had.I couldn't keep the battery in the right place. I have a roll around my tummy and when I moved, the battery would move off the end of the terminal. This was the first time I tried to look up reviews. I just hope you have better luck than I did. Perhaps if you are curvy in the right places, it may stay in place. Let me know how you get along with it. I can't offer any advice. I'm having mine removed so that I can possibly have spinal fusion to keep the bones in the right place, L4 and 5.

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@lorirenee1

@rwinney @jesfactsmon You guys are the best. Just read both your posts. To show how ludicrous life can be, I just microwaved a small glass bowl of glass noodles. And speaking of glass, the glass bowl exploded in my hand when I took it out of the microwave. Shards of glass everywhere, surrounded by 4 curious cats, and 1 five year old grandson, Noah. Here I am, wired inside, battery on my back, surrounded by glass. I literally squatted down on these still strong legs of mine, and cleaned up as best I could. Used my fucked up feet to push glass to my hardwood floors, squatted down, and got the rest up. It was either that, or call my husband to come home from work, and clean up. I thought that might be too long to wait, with glass everywhere. I never bent down. Not to do that with the wires in my back. I squatted. If these wires inside me have not become totally screwed up, it will be a miracle…….just, OH MY GOD!!!!! Love, Lori Renee

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Yikes!!

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