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

@helennicola
No, I haven't heard about it.

Jim

@tigreyes2004 My pain management doctor recommended a Nevro HF10 Spinal Cord Stimulator for nerve pain in my arm and hands. I joined a spinal cord stimulator group on Facebook and was able to receive a lot of firsthand information about people’s experiences with stimulators. It was very enlightening. Ultimately, I didn’t want to risk the surgery for something that may or may not work so I decided against it.

Hello Patrick17, I am Sunnyflower. I am very sorry to hear your pain is bad enough that you have considered a spinal cord stimulator. When time allows, would you mind sharing the Facebook page you speak of here? My wish for you is relief and healing as well as God's comfort and peace through Christ which surpasses all understanding, This is the only thing that gets me through. Many blessings, Sunnyflower. @tigreyes2004

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 🙏🙏🙏

@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

@johnjames

I looked at the suicide discussion and saw your message. Are you doing ok? Agent Orange is surely playing havoc with your health.

I need to get offline, so I won't start telling you about where my mind has been lately. Too much going on. When I get overwhelmed, I get back into the suicide mode. I'm not suicidal, but I'm experiencing the feelings that go with it. So, prayers would be appreciated.

Jim

Hello Sparshall, just joined, 10 years of non diabetic PN. All fours involved. Please tell me side effects of IVIG at infusion side effects after . Thank you. I believe Hishmotos started all, Fibromyalgia,CFS, had a “ ginuea pig “ Lymes vaccine before it was dropped. Opthal. MD Thinks also Sojourns. Osteoarthritis all over also. Any info helpful but mostly interested in autoimmune med.

@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)

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?

@jimhd Sending prayers your way