Neuropathy Seminar of April 9, 2025

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/.

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.

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.

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:)

What is IVIG? I've never heard of this.

https://ameripharmaspecialty.com/ivig/ivig-treatments-for-neuropathy-what-you-need-to-know/#:~:text=IVIG%2C%20or%20intravenous%20immunoglobulin%2C%20is,tingling%2C%20pain%2C%20and%20numbness.
I take Panzyga

I think you are correct - everyone reacts different.

I’ve had 2 spinal stimulators & a DRG for my lower back & feet. I had remarkable results in the tests/trials & have never received more than 10-15% relief from any of them.

I also have a pain pump which has been a game changer for me but still has not taken all the pain away. I am at the dosage limit for my current pain clinic, but there are others around who will go higher. Some days the foot pain is still really bad.

I have never had any relief from any type of stimulators that rely on “electric current” to provide pain relief. It does not matter whether they are implants or outside of the body ones. I was scheduled for a DRG and decided not to proceed with the trial for it. As I indicated, after trying “Tens” units or an SCS that during the trial was manipulated to various intensity degrees; Sanexas treatments, or a Nooro foot massager that supposedly worked wonders to the point that it would help regenerate nerves damaged by PN I said stop! No more of this nonsense. I have decided just to rely on injections that provide some short term relief, Tramadol and Ibuprofen as needed, and foot massages that allow me to sleep some. I do not know what will I need to do in the future if the numbness, cold-burning feeling and tingling becomes worse. I will cross that threshold with the help of pain management professionals and with my faith that God will provide!

My experience with electric stimulating units have not provided any relief to my most problematic issues from PN, cold and burning sensation on my feet and pain on the back of my thighs. The most recent suggestion as I indicated was to have a DRG implant trial to see if that would help, and was first given medial branch block injections to determine if I was a candidate for that unit. I refused as my experience with electrical impulse units to block pain signals was for naught. I asked the pain management doctor for another option that might do a similar job. He indicated that a facet joints nerve ablation injection could help and it was a minimally invasive procedure performed under local anesthesia. Well, not having other non-surgical options I agreed. I am happy to report that this has been so far (4 weeks) the best pain relief procedure I have had after suffering for 10+ years of this malady. It is not a cure and I will probably have to have more of this procedures in a few months as the nerve endings will regenerate. This varies from person to person, but it could be months or years before repeating the procedure. I am very positive that the relief will be long term. Thanks to God and the physician that did it. Might want to check it out.

I want to add that the procedure was performed on facet joints L3, L4, and L5. The pain relief experienced is about 70% and allows me to sleep soundly for the very first time in many years. I still have a tingling sensation on my toes mainly, and have not walked a long distance yet, that was a problem before. Only time, that inexorable force of nature will determine what is next but I am really glad that I had this done. You may want to investigate with your care provider. Much luck to you fellow sufferers.