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Moderator

Living with Neuropathy - Welcome to the group

Posted by Colleen Young, Connect Director @colleenyoung, Jul 14, 2017

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

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

steeldove | @steeldove | Jul 26, 2020
In reply to @jimhd "Hi, @barbbie As Hank mentioned, I have a Burst DR spinal cord stimulator, implanted in 2017...." + (show)
@jimhd

Hi, @barbbie As Hank mentioned, I have a Burst DR spinal cord stimulator, implanted in 2017. It gave me 80% pain reduction. It was wonderful, after living for several years with increasingly brutal pain in my feet due to sfn. That's the good news. The first year it was great to be living with so much less pain.

Bad news. It started losing its effectiveness and I had to have it adjusted every 3 months, until the end of last year. I turned it off for the month of March and couldn't notice any change. I turned it back on in April.

Sort of good news. I had an appointment with a neurosurgeon, who ordered an MRI of my lower back and pelvis. She found significant spinal stenosis, and recommended surgery to relieve the pressure on my nerves, telling me that I should expect to have some pain relief. But there's no way to know how much relief until after surgery. I scheduled the surgery for the end of September, though I'd love to have it sooner. Because of the amount of yard work and misc. maintenance around our house and barn, I can't take time off to recover from the surgery. So, that's why I scheduled it so far in advance.

After we find out how much the back surgery helps, we could get back to adjusting the SCS so it starts doing its job. Fingers crossed. Prayers being prayed.

Jim

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I expect Pain Medicine docs when I see them next week at Mayo will talk about a spinal cord stimulator and a peripheral nerve stimulator, but when they see the extent of my spinal arthritis, scoliosis, kyphosis, and stenosis, I'm not sure what I'll hear.

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1 reply
Hank | @jesfactsmon | Jul 26, 2020
In reply to @steeldove "I expect Pain Medicine docs when I see them next week at Mayo will talk about..." + (show)
@steeldove

I expect Pain Medicine docs when I see them next week at Mayo will talk about a spinal cord stimulator and a peripheral nerve stimulator, but when they see the extent of my spinal arthritis, scoliosis, kyphosis, and stenosis, I'm not sure what I'll hear.

Jump to this post

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

REPLY
1 reply
Hank | @jesfactsmon | Jul 26, 2020
In reply to @jimhd "Hi, @barbbie As Hank mentioned, I have a Burst DR spinal cord stimulator, implanted in 2017...." + (show)
@jimhd

Hi, @barbbie As Hank mentioned, I have a Burst DR spinal cord stimulator, implanted in 2017. It gave me 80% pain reduction. It was wonderful, after living for several years with increasingly brutal pain in my feet due to sfn. That's the good news. The first year it was great to be living with so much less pain.

Bad news. It started losing its effectiveness and I had to have it adjusted every 3 months, until the end of last year. I turned it off for the month of March and couldn't notice any change. I turned it back on in April.

Sort of good news. I had an appointment with a neurosurgeon, who ordered an MRI of my lower back and pelvis. She found significant spinal stenosis, and recommended surgery to relieve the pressure on my nerves, telling me that I should expect to have some pain relief. But there's no way to know how much relief until after surgery. I scheduled the surgery for the end of September, though I'd love to have it sooner. Because of the amount of yard work and misc. maintenance around our house and barn, I can't take time off to recover from the surgery. So, that's why I scheduled it so far in advance.

After we find out how much the back surgery helps, we could get back to adjusting the SCS so it starts doing its job. Fingers crossed. Prayers being prayed.

Jim

Jump to this post

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

REPLY
steeldove | @steeldove | Jul 26, 2020
In reply to @jesfactsmon "I hope they give you the thumbs up to go ahead @steeldove , it seems like..." + (show)
@jesfactsmon

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

Jump to this post

@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!!!

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barbbie | @barbbie | Jul 26, 2020
In reply to @jimhd "Hi, @barbbie As Hank mentioned, I have a Burst DR spinal cord stimulator, implanted in 2017...." + (show)
@jimhd

Hi, @barbbie As Hank mentioned, I have a Burst DR spinal cord stimulator, implanted in 2017. It gave me 80% pain reduction. It was wonderful, after living for several years with increasingly brutal pain in my feet due to sfn. That's the good news. The first year it was great to be living with so much less pain.

Bad news. It started losing its effectiveness and I had to have it adjusted every 3 months, until the end of last year. I turned it off for the month of March and couldn't notice any change. I turned it back on in April.

Sort of good news. I had an appointment with a neurosurgeon, who ordered an MRI of my lower back and pelvis. She found significant spinal stenosis, and recommended surgery to relieve the pressure on my nerves, telling me that I should expect to have some pain relief. But there's no way to know how much relief until after surgery. I scheduled the surgery for the end of September, though I'd love to have it sooner. Because of the amount of yard work and misc. maintenance around our house and barn, I can't take time off to recover from the surgery. So, that's why I scheduled it so far in advance.

After we find out how much the back surgery helps, we could get back to adjusting the SCS so it starts doing its job. Fingers crossed. Prayers being prayed.

Jim

Jump to this post

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!

REPLY
1 reply
Hank | @jesfactsmon | Jul 27, 2020
In reply to @barbbie "I will pray for a great outcome for your surgery. I prefer my pain management doc..." + (show)
@barbbie

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!

Jump to this post

@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

REPLY
1 reply
barbbie | @barbbie | Jul 27, 2020
In reply to @jesfactsmon "@barbbie you are so very fortunate to have had such good luck with your pain management..." + (show)
@jesfactsmon

@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

Jump to this post

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.

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madsoann8 | @madsoann8 | Jul 28, 2020

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

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3 replies
Mentor
John, Volunteer Mentor | @johnbishop | Jul 28, 2020
In reply to @madsoann8 "This is Naomi, new to the group. Always looking for suggestions for dealing with and slowing..." + (show)
@madsoann8

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

Jump to this post

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?

REPLY
Hank | @jesfactsmon | Jul 28, 2020
In reply to @madsoann8 "This is Naomi, new to the group. Always looking for suggestions for dealing with and slowing..." + (show)
@madsoann8

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

Jump to this post

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

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