Living with Neuropathy - Welcome to the group

I hope they give you the thumbs up to go ahead @steeldove , it seems like you'd benefit greatly from it. My hat is off to you at your bravery and willingness to go forward with this considering all that you are dealing with. I admire you! Best, Hank

Jim, so maybe your spinal stenosis is at the root of your SCS no longer working, that would be a great circumstance! I am definitely shooting prayers your way my friend, and I hope the SCS starts helping again after your surgery. Best, Hank

@jesfactsmon Hank, I'm 82 years old, and will be driving myself from Springfield MO to Rochester using the wonderful Kempf hand controls on my little Prius C. That's the part that takes bravery!!!

I will pray for a great outcome for your surgery. I prefer my pain management doc as I am allergic to so many medications, including MAC anesthesias. He has helped me significantly with radio frequency ablations. In some places I have had close to two years relief. I hate headaches and an injury to my neck gave me occipital headaches. It's been a year since I had the last rfas and I am still headache free. He has also done some on my lower back with success. Not sure how long this latest series have been doing their thing.. With the stimulator I have seven programs and a variety of pulsations. It can take adjustment to the stimulator to get the best for you. I just turned my feet one on. You mentioning that reminded me I have that available.. Feels pretty good while sitting!

@barbbie you are so very fortunate to have had such good luck with your pain management doctor. And I say "luck" because as great a guy as he must be I have to think there is much that is out of his hands. His success in trying things for you is fabulous though and it makes me happy for you. It's nice to hear a success story regarding these stimulators. Not sure my wife is ready to undertake getting one yet but we may get there eventually, especially if we hear more stories like yours. Best to you, Hank

Hank, my whole story with my pain management doc is incredible. He actually called me and asked me to be his patient. I later found out the pain management doctor I had been seeing asked him to take me on as a patient! I'm not sure the exact reason, but I had a great relationship with him personally, but I believe my incredible number of allergies to meds may have done it. In my trial time of the stimulator he gave me versed something I am allergic to. When I asked him why, he said he only gave me a child's dose. My current pain management doc is the same age as my older son. The first procedure he did on me he gave me something that caused larngeal edema, an allergic reaction. I called, he happened to be on call, and didn't recognize me because my voice was exceedingly low and scratchy. He gave me his personal cell phone number to call. Told me he had never done that before. That was eight years ago. We text on a some what regular basis and always after a procedure. He has a great sense of humor. I have told him I think of him as an adopted son. He treats me like a queen, but I have discovered that's how he treats other patients as well. I just have a special connection. I would encourage your wife to consider doing the trial which they always do before doing an implant. It's a great way to see what it can do for you. Mine was done in the office. It wasn't a difficult process pain wise.I have a Boston Scientific system. Thanks for giving me a chance to respond.

This is Naomi, new to the group. Always looking for suggestions for dealing with and slowing the effects of neuropathy.

Hi @madsoann8, I would like to add my welcome to Connect along with @rwinney, @artscaping, @jesfactsmon, @jimhd and other members. You may find some helpful tips by reading through some of the member experiences in the following discussions.

Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

There is also a discussion where members share ideas on treatments — Ideas for pain relief from Small Fiber Neuropathy (SFN): https://connect.mayoclinic.org/discussion/ideas-for-pain-from-small-fiber-neuropathy/

Are you able to share a little more about your diagnosis and symptoms of neuropathy?

Hi Naomi, not sure if you are looking for answers to specific questions or just finding out what people are talking about generally. I happened upon this Connect forum by accident when searching for something or other. After finding it I spent a couple or weeks or more reading through hundreds of the various posts before ever posting myself. I learned quite a bit doing just that. My wife has neuropathy in her feet mostly so I do a bit of online research for her since the internet is not her thing particularly. As John mentioned in the previous post if you share some of your experiences about your own case of neuropathy, perhaps you might get some useful feedback or at least a compassionate ear or two from people here. Look forward to hearing more from you. Best, Hank

@madsoann8 Hello Naomi, welcome to Mayo Connect. I'm Rachel and am glad you posted! I noticed you joined in June and appeared to have posted June 30th, as Daisy, but received no reply. My appologies for the oversight. I see @johnbishop and @jesfactsmon have replied so far, asking for a bit more detail on your peripheral neuropathy diagnosis and situation. I have Small Fiber Peripheral Polyneuropathy from B12 deficiency. It's throughout my body and has changed my life drastically. I take Lyrica and Hydrocodone for pain, am on a strict supplement protocol for neuropathy, rightfully called "The Protocol". It has helped settle many unwanted oddities and feelings in my body. I have changed my lifestyle which includes a healthier diet of fruits and vegetables, reducing/eliminating processed and inflammatory foods. Excercise and body movement despite pain or being uncomfortable is imperative for neuropathy. I use a lot of heat and ice, it's my savior. I go to physical therapy once a week and receive myofascial release plus, work on occupational therapy excercises to the best of my ability. Connect is a wonderful group of personal experiences, support, encouragement and empathy. Please dont be shy, share your story and know you are not alone.
Be well,
Rachel