Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

@rwinney

@jimhd Hi Jim. How ya doing? You know I will report back for sure. 😊

Jump to this post

@rwinney, Did I just read that you are going to get to go to the Pain Clinic in Florida? Well, let the trumpets blare and the drums start rolling. Let's get packing.

Your post is more revealing about what was going on during your four-year search for acceptance of the hand you have been dealt. Some of us worry quietly, others, like you, just dig in, do the research, try it out, and then evaluate its potential. Wow, it is probably easier to win an Academy Award than to make it to Rachel's recommended list.

Just keep that big warm heart that you have open to opportunities and willing to share.

Congratulations,
Chris

REPLY
@artscaping

@rwinney, Did I just read that you are going to get to go to the Pain Clinic in Florida? Well, let the trumpets blare and the drums start rolling. Let's get packing.

Your post is more revealing about what was going on during your four-year search for acceptance of the hand you have been dealt. Some of us worry quietly, others, like you, just dig in, do the research, try it out, and then evaluate its potential. Wow, it is probably easier to win an Academy Award than to make it to Rachel's recommended list.

Just keep that big warm heart that you have open to opportunities and willing to share.

Congratulations,
Chris

Jump to this post

@artscaping Can you love someone that you dont actually know? Because, I think I love you Chris!!! 😊You're the best! Thanks for being so uniquely you.
I'm hopeful and very willing to share anything and everything I learn with hope that it can help someone elses journey.

REPLY
@artscaping

@rwinney, Did I just read that you are going to get to go to the Pain Clinic in Florida? Well, let the trumpets blare and the drums start rolling. Let's get packing.

Your post is more revealing about what was going on during your four-year search for acceptance of the hand you have been dealt. Some of us worry quietly, others, like you, just dig in, do the research, try it out, and then evaluate its potential. Wow, it is probably easier to win an Academy Award than to make it to Rachel's recommended list.

Just keep that big warm heart that you have open to opportunities and willing to share.

Congratulations,
Chris

Jump to this post

I would just like to add to Chris's comment that I feel honored to "know" you ALL of you guys. Through this neuropathy journey my wife and I are on I have learned to have a deep respect for the genuine goodness in people. It's easy to become cynical in this world. So meeting all of you on this forum is revealing to me that there is much to be valued in our fellow humans, despite what we see everyday in the media.

REPLY
@jesfactsmon

I would just like to add to Chris's comment that I feel honored to "know" you ALL of you guys. Through this neuropathy journey my wife and I are on I have learned to have a deep respect for the genuine goodness in people. It's easy to become cynical in this world. So meeting all of you on this forum is revealing to me that there is much to be valued in our fellow humans, despite what we see everyday in the media.

Jump to this post

Hank, you have said so perfectly what I have often thought but not said. I am very grateful to have available the shared knowledge, experience and caring this forum affords us. I would also like to add my heartfelt thanks to all. Helen

REPLY
@jesfactsmon

I would just like to add to Chris's comment that I feel honored to "know" you ALL of you guys. Through this neuropathy journey my wife and I are on I have learned to have a deep respect for the genuine goodness in people. It's easy to become cynical in this world. So meeting all of you on this forum is revealing to me that there is much to be valued in our fellow humans, despite what we see everyday in the media.

Jump to this post

Well said Hank and I whole heartedly agree with you.

REPLY
@rwinney

@artscaping Can you love someone that you dont actually know? Because, I think I love you Chris!!! 😊You're the best! Thanks for being so uniquely you.
I'm hopeful and very willing to share anything and everything I learn with hope that it can help someone elses journey.

Jump to this post

@rwinney @artscaping I have felt love for you guys, very often. I have felt love for others here, too. I mean, we share our souls here. If that ain't love, what is? We try our very best to help, listen, learn, laugh….the only thing we don't do, is hug. And with Covid, we cannot, anyway! Rachel, I am so happy you are going to Mayo. Finally! I just called my Pain Doc cause elective surgeries are opening up next week, and I am hoping for my Dorsal Root Trial. I know they are prioritizing patients, and getting their acts together, so it might take some time. Meanwhile, I hobble along, Kratom and Marijuana at hand. What a goofy life. From one moment to the next, healthy to sick…..Basically, just wanted to send my love!!!! MWA!!! Lori Renee

REPLY
@lorirenee1

@rwinney @artscaping I have felt love for you guys, very often. I have felt love for others here, too. I mean, we share our souls here. If that ain't love, what is? We try our very best to help, listen, learn, laugh….the only thing we don't do, is hug. And with Covid, we cannot, anyway! Rachel, I am so happy you are going to Mayo. Finally! I just called my Pain Doc cause elective surgeries are opening up next week, and I am hoping for my Dorsal Root Trial. I know they are prioritizing patients, and getting their acts together, so it might take some time. Meanwhile, I hobble along, Kratom and Marijuana at hand. What a goofy life. From one moment to the next, healthy to sick…..Basically, just wanted to send my love!!!! MWA!!! Lori Renee

Jump to this post

@lorirenee1 I feel the LOVE! Thank you and I as well am happy for you to be moving in the right direction with your trial. All good is wished for you!!

REPLY
@lorirenee1

@rwinney @artscaping I have felt love for you guys, very often. I have felt love for others here, too. I mean, we share our souls here. If that ain't love, what is? We try our very best to help, listen, learn, laugh….the only thing we don't do, is hug. And with Covid, we cannot, anyway! Rachel, I am so happy you are going to Mayo. Finally! I just called my Pain Doc cause elective surgeries are opening up next week, and I am hoping for my Dorsal Root Trial. I know they are prioritizing patients, and getting their acts together, so it might take some time. Meanwhile, I hobble along, Kratom and Marijuana at hand. What a goofy life. From one moment to the next, healthy to sick…..Basically, just wanted to send my love!!!! MWA!!! Lori Renee

Jump to this post

@lorirenee1 My appointment with the neurosurgeon was bumped from the first part of March to the end of June, but I hope to get at least a video appointment soon. My feet hope. We were to discuss any options to consider before doing a drg implant. If I go ahead with it I'm surely hopeful that it will do as good a job as my scs, but last longer than a couple of years. I'll be looking forward to hearing from you your experience with the trial.

I hope it will give you significant pain relief.

Jim

REPLY
@jimhd

@lorirenee1 My appointment with the neurosurgeon was bumped from the first part of March to the end of June, but I hope to get at least a video appointment soon. My feet hope. We were to discuss any options to consider before doing a drg implant. If I go ahead with it I'm surely hopeful that it will do as good a job as my scs, but last longer than a couple of years. I'll be looking forward to hearing from you your experience with the trial.

I hope it will give you significant pain relief.

Jim

Jump to this post

@jimhd Hi, Jim. I certainly hope you get some help that works, before you opt for the DRG trial. I exhausted everything I know of. At this point, I just want to feel better. I don't have to tell you how excruciating this neuropathy is. I wanted to take a walk today, and I must of tried on easily a dozen pair of shoes, when I finally decided not to walk. They all felt like walking on gravel. I live on marijuana, and hate the feel of it. Kratom is way better, but I cannot take it every day. Meanwhile, pain like hell. Anyway, keep me posted, and I will post, when I find out when I will get my trial. Illinois opens up for elective surgery May 12th, and I am sure the docs are busy making sure they are following virus protocols and prioritizing patients. God knows when I will actually be scheduled. Too much. My best to you. Lori

REPLY

Please let us know how your Dorsal Root surgery goes … ! Peggy

REPLY
@lorirenee1

@jimhd Hi, Jim. I certainly hope you get some help that works, before you opt for the DRG trial. I exhausted everything I know of. At this point, I just want to feel better. I don't have to tell you how excruciating this neuropathy is. I wanted to take a walk today, and I must of tried on easily a dozen pair of shoes, when I finally decided not to walk. They all felt like walking on gravel. I live on marijuana, and hate the feel of it. Kratom is way better, but I cannot take it every day. Meanwhile, pain like hell. Anyway, keep me posted, and I will post, when I find out when I will get my trial. Illinois opens up for elective surgery May 12th, and I am sure the docs are busy making sure they are following virus protocols and prioritizing patients. God knows when I will actually be scheduled. Too much. My best to you. Lori

Jump to this post

Lori, my wife and I are also interested in how this goes for you. I had not heard of it before but still get immediately excited whenever I find out about any new possible PN solution. Maybe this DRG procedure will provide us all some new hope, based on your results. Tonight Linda's pain level was through the roof for 3 full hours before bedtime. She went to bed and went right to sleep thank god (I rubbed her feet as she was drifting off -this has been helpful to her lately). I started looking through some old links to websites related to PN research and noticed one about FLT3 that I did not remember. Apparently there is a company, Biodol, that is trying to develop a pain treatment with it. If anyone knows anything regarding it I'd love to hear about it. Anyway, hope you get scheduled soon Lori.

REPLY

Hi @jesfactsmon, I'd appreciate knowing what the DRG procedure is all about. And, what does DRG stand for?
thanks

REPLY
@jamesinsonoma

Hi @jesfactsmon, I'd appreciate knowing what the DRG procedure is all about. And, what does DRG stand for?
thanks

Jump to this post

@jamesinsonoma, I think that DRG procedure stands for Dorsal Root Ganglion Stimulation. Here's more information:

DRG: Life-Changing Technology for Chronic Pain:
https://www.abbott.com/life-changing-tech/drg-life-changing-technology-for-chronic-pain.html

DRG FOCUS: A Multicenter Study Evaluating Dorsal Root Ganglion Stimulation and Predictors for Trial Success
https://pubmed.ncbi.nlm.nih.gov/30085382/

Liked by lorirenee1

REPLY
@jamesinsonoma

Hi @jesfactsmon, I'd appreciate knowing what the DRG procedure is all about. And, what does DRG stand for?
thanks

Jump to this post

I haven't read much about it, but from the little that I did this is what caught my eye about it:

"Three months after the implant, 70 percent of participants who received DRG stimulation had greater than 80 percent pain relief, compared to 52 percent of the control group who underwent SCS."

The above was from the following website:
https://consultqd.clevelandclinic.org/dorsal-root-ganglion-stimulation-offered-crps-lower-extremities/
I am VERY interested to hear whether @lorirenee1 gets positive results. Go Lori!

REPLY
@jesfactsmon

I haven't read much about it, but from the little that I did this is what caught my eye about it:

"Three months after the implant, 70 percent of participants who received DRG stimulation had greater than 80 percent pain relief, compared to 52 percent of the control group who underwent SCS."

The above was from the following website:
https://consultqd.clevelandclinic.org/dorsal-root-ganglion-stimulation-offered-crps-lower-extremities/
I am VERY interested to hear whether @lorirenee1 gets positive results. Go Lori!

Jump to this post

@jesfactsmon @johnbishop Hi guys! John, I have to thank you so much for posting the DRG studies you found. I will read them all, and have read a bit already. You are a pro at finding information!!! Hank, I will post as soon as I get a trial done. So far, I have called and emailed my pain doc about 3 days ago, but have not heard from him to reschedule yet. I know that in Illinois, all elective procedures begin on May 12th. I read that patients are prioritized as far as who gets procedures done first. I know there are people with really serious things that have been delayed, so I don't know when I will be scheduled. When I am scheduled, I will post that I am. It is just not soon enough. I feel like a human pain machine, with such aberrant, abnormal foot sensations that it is utterly freaky. I would describe, but it is actually rather disgusting. EWWWWW!!!!! Anyway, I cannot do it soon enough. My husband is so funny. I live on Marijuana and Kratom, and now he is pushing alcohol. He says that maybe if I get drunk enough, I won't feel a thing. I may have a few glasses of wine tonite, but I am not a drinker, so I don't know if I can get the stuff down. I also don't want to like alcohol, as it is not a good thing to drink. So far, the Kratom works best for helping pain, and not making me stoned. Last night, while watching Breaking Bad, a great series for binge watching, I was taking bits of Marijuana Gummies as I watched. Whoa, with a 45 minute delay before they work, I thought I went to the moon with how I felt once a Gummy kicked in. I can't believe I ever enjoyed the stuff. But it beats pain. I also was able to still concentrate on TV, which is good. Anyway, I am rambling, probably cause I have marijuana in me as I am writing. What a life!!!! And now, we can't even hug anybody. Big gip! Anyway, be safe and as well as you can be. I will post once my trial is planned, and probably sooner! Lori

REPLY
Please login or register to post a reply.