Connect
← Return to Now what! Neuropathy in feet and ankles.. Numbness in hands and arms
Discussion
Now what! Neuropathy in feet and ankles.. Numbness in hands and arms
Neuropathy | Last Active: Apr 25 6:40pm | Replies (68)Comment receiving replies
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
Replies to "@patrick17 I suppose you've read my experience with scs. I have a Burst DR spinal cord..."
Jim, your journey is almost too much to take in! I can't wrap my mind around your suffering and all the logistics to try to manage it!!
I too have "severe" canal stenosis and have consulted with 2 neurosurgeons. I've lost almost all feeling in the area that would come into contact with a saddle were one to be riding a horse. I have textbook Sxs of equina cauda syndrome.
I 've lost some bladder and bowel functions and testing shows neuro etiology. I can't feel my thighs a lot and when I do, they feel extremely fatigued and won't take me where I want to go very easily.
The surgeons say they can see a tiny bit of fluid around my spinal cord nerves but agree with the radiologist's reading of "severe" stenosis. They tell me I'm very high risk for surgery bc of my poor health. So I don't know what will happen. I have an appointment on 10/29.
Then in November I have cervical and occipital injections on the 11th. Had a lumbar in September.
More stuff, different day. Being ill is a career. It consumes most of my time. Just counting out the handfuls of meds every day throughout the day and night is overwhelming.
No complaints, just info.
I 'm not on Facebook much anymore for the same reasons but stay on to keep in touch with friends and family.
Hope some blessings come your way today and that you get some relief!
Warmest wishes, Sunnyflower
@patrick17
Connect
Hi Jim, I’m so sorry for your experience with your spinal cord stimulator. While they are helpful for some people, they are problematic for others. My heart goes out to those who have had bad experiences with them. That’s very unfortunate that there is no longer a pain management doctor in your area who can manage a pain pump. A pain pump might be very helpful for you. I hope you pray that you will find a doctor who will help you with your spinal stenosis and for a reduction in your pain.
Patrick