Now what! Neuropathy in feet and ankles.. Numbness in hands and arms

@patrick17

I suppose you've read my experience with scs. I have a Burst DR spinal cord stimulator, implanted in June of 2017. Surgery was no big deal. It was just frustrating that surgery was at the beginning of the very busiest time of year for yard work. The lawns were up to my knees when I was finally able to mow.

The stimulator has been doing nothing to treat my pain this past year. I found out that I had severe spinal stenosis, and had surgery for that 3 weeks ago. I was hoping that it would reduce the pain, having the nerves released from the grip of stenosis, but no such luck. I didn't have any adjustments to the scs since February, because I was waiting to see what effect stenosis surgery would have. The Abbott rep adjusted it Thursday, and the pain just got worse, so I've turned the setting down 3 notches in the past few days, so now the pain is pretty much what it's been all year. It's 6-7 during the day, and 8 or 9 when I lie down.

My neurologist agreed with me that a pain pump implant could be a reasonable next step. But then, the next day he learned that all of the doctors in my area who manage the medication in the pump have stopped doing it, and I would have to drive 160 miles to the nearest pain pump management doctor.

A dorsal root ganglion stimulator implant was in the discussion, but the surgeon who did my back surgery told me that it isn't designed for diffuse pain like mine. So, everything is up in the air now, including convincing my pcp to increase the dose of my morphine prescription back to what it was a while ago.

Isn't neuropathy fun?!! It's certainly a very unpredictable disease.

I've never heard of the Personage Turner Syndrome. I grew up in the parsonage and raised my kids in one. Probably not related to the syndrome. I deactivated my Facebook account more than a year ago and for the most part haven't missed it. I do miss the connection with my extended family and a few friends, and a couple of FB groups. The stress of the negativity on FB was having a bad effect on my mental health struggles, so I'm better off without it.

Before I wander any further astray, I'll just say goodnight.

Jim

Hello @eleanork, I would like to add my welcome to Connect along with @jesfactsmon and other members. There are some other discussions on Connect you may be interested in reading and following:

- IVIG Infusions: https://connect.mayoclinic.org/discussion/ivig-infusions/
- Hashimoto's Thyroiditis and IVIG Treatment?*: https://connect.mayoclinic.org/discussion/hashimotos-thyroiditis-and-ivig-treatment/
- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Are you considering IVIG infusions to help with the neuropathy?

@eleanork
Hi Eleanor, welcome to Mayo Connect. In case @sparshall doesn't answer you right away, and if you are interested, you can get to her posting history by clicking right on this text in blue here > @sparshall . That takes you to her Profile page, and if you scroll down a bit you'll see her posts, which you can page through from most recent to oldest. Just FYI. Best to you, Hank (another user)

Thank you for the help Hank.

I have Neuropathy in my ankles, feet & legs & my dr. wants me to try out the HF10 the Spinal Cord Stimulator. Has any one tried this or know anything about it. I am having doubts & I need more research on it. Any help would be appreciated.

I have not used it personally buut I know some people who have used it for neuropathy and it has been effective when medications are not helpful on thier own. It's managed by a pain specialist. They have a way to test it on you prior to installation, that way you feel it and determine if it will actually help you prior to having it imbedded. I have found some relief with using dr schools shoes, an electric blanket, ibuprofen prior to an active day. When I have more intense pain, a tens machine has recently worked for me. It's about trying to keep active walking daily but not over doing it.

@jimhd Sending prayers your way

Hello, Sunnyflower. I joined two Facebook spinal cord stimulator groups. One group was Spinal Cord Stimulator Success Stories. Despite its name there were many postings by people who experienced difficulties with their spinal cord stimulators. Another group I joined was the Nevro Spinal Cord Stimulator US Support group. This group was specific to the Nevro HF10 Spinal Cord Stimulator. There is a blue Search bar at the top of the Facebook page where you can search for these groups.

FYI... I only joined Facebook so that I could join a group about my condition, Parsonage Turner Syndrome. I later learned there were also groups for Spinal Cord Stimulators. Each of the groups has provided a lot of useful information.
Sunnyflower, I hope this is of help to you. Thanks for your kind thoughts! You are one of the people here who I pray for each morning. Take care, Patrick 🙏🙏🙏

@jimhd Terrible to say, but I cannot imagine handling brutal pain without suicidal thoughts. I have them all the time. On top of it all, I was a veterinary technician for a few years, and watched first hand, the kindness of euthanasia. I watched suffering ended immediately, and without trauma of any kind. It's called being humane. Something that never really caught on for us humans, except in a few states. Will I ever committ suicide? If I could be guaranteed to do it correctly, perhaps. That is maybe a terrible thing to say. I don't know. But what is the point in living this way? I am sorry you are so very low. I have no idea what to say, other than that I truly understand it. I do know that I am at least able to take my Kratom and distract myself from pain. Like you, physical activity helps a lot. But is this a life? I have no idea. Lori Renee