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Neuropathy Seminar of April 9, 2025

Posted by antonintampfl2009 @antonintampfl2009, 2 days ago

Yesterday’s presentation, although informative, did not, in my opinion present any earth shattering developments into future research to help us cope with this malady. Maybe my expectations were too high, and unfortunately there was not time for questions and answers. Do not know if the question I posed, using the ? icon of the presentation box was lost in the shuffle or it will ever be addressed by the modulator or the presenter. My question was, if I had a Spinal Cord Stimulation (SCS) implant that did not do its intended job, might a Dorsal Root Ganglion (DRG) implant help? Maybe this is one of those questions that is thrown into the bucket of “we are all different, we all perceive pain differently; we all react differently to procedures and medications. Oh, well, we keep on trucking, hoping for some magic panacea that might come before my final voyage. God bless you all.

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

Mentor
John, Volunteer Mentor | @johnbishop | 2 days ago

Hi @antonintampfl2009, Sorry you didn't get your question answered when watching the live webinar. For those that didn't see it, you can view it on the Foundation for Peripheral Neuropathy's website here - https://www.foundationforpn.org/events/emerging-options-for-neuropathic-pain-management/. It will be added to their YouTube channel at some time in the near future - https://www.youtube.com/@foundationforperipheralneu4122.

There are a few member comments on DRG implants if you want to scan through the search results here - https://connect.mayoclinic.org/search/comments/?search=Dorsal%20Root%20Ganglion%20(DRG)%20implant. There is also newsfeed article with a Mayo patient story here that lists a few helpful links at the bottom - Defeating Foot Pain With Neurostimulation: https://connect.mayoclinic.org/blog/adult-pain-medicine/newsfeed-post/defeating-foot-pain-with-neurostimulation-2/.

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mrmacabre | @mrmacabre | 2 days ago

I'm not expecting any kind of miracle cure or treatment for my neuropathy, and I don't quite understand what other people who have to deal with this crap are hoping for. Neuropathy is permanent, once a nerve is damaged, or it dies that's it, game over. That's the message that I got from both of my neurosurgeons, all 3 neurologists, and from my GP who I've been seeing for over 25 years.
Can the related pain be treated? To some extent yes, but it's always there, at least in my case. I'm taking the maximum dosage of gabapentin that my doctor will prescribe, along with ALA, which dulls the pain most of the time, but I still have a bad day occasionally.
Anything that's advertised on TV and claims to be the next miracle treatment/cure for nerve pain isn't anything other than a scam.

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1 reply
artemis1886 | @artemis1886 | 2 days ago
In reply to @mrmacabre "I'm not expecting any kind of miracle cure or treatment for my neuropathy, and I don't..." + (show)
@mrmacabre

I'm not expecting any kind of miracle cure or treatment for my neuropathy, and I don't quite understand what other people who have to deal with this crap are hoping for. Neuropathy is permanent, once a nerve is damaged, or it dies that's it, game over. That's the message that I got from both of my neurosurgeons, all 3 neurologists, and from my GP who I've been seeing for over 25 years.
Can the related pain be treated? To some extent yes, but it's always there, at least in my case. I'm taking the maximum dosage of gabapentin that my doctor will prescribe, along with ALA, which dulls the pain most of the time, but I still have a bad day occasionally.
Anything that's advertised on TV and claims to be the next miracle treatment/cure for nerve pain isn't anything other than a scam.

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Have you tried IVIG? It helps with nerve regeneration. Mine is autoimmune but in college in anatomy and physiology for RN school you are taught that nerves do not regenerate. The only thing in the body that can regenerate is the liver. What neurologist do not tell you is about what happens when it moves into your heart or paralysis. I have learned from watching these seminars they are very basic. I watched two and they were very frustrating. In Israel there has been nerve regeneration with medical marijuana.
Also Dr Oaklander talks about it on YouTube.

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nrg | @nrg | 1 day ago

I was recently going to try a nerve stimulator device for free for one week but based on the tumor on my spine, Dr.said he didn't think it would do anything for my issues so I opted to take laser treatments for my neuropathy pain and 19 sessions later, no pain for going on 10 weeks. I was hoping it would do more for my balance but it hasn't so I have moved on to using the vibration platform at my gym which helps short term.
Always looking to learn new things that may help me that's why I'm here:)

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