@phoenix0509

I had an Abbott scs implanted in June 2017. It's a Burst DR, so I don't feel any vibration like others do. I had unbearable pain in my feet as you described, and the scs gave me 75%+ relief. It was wonderful!

The first year or so I continued to have significant relief. Since then I've seen the Abbott rep for adjustment of the pain coverage every 3 months. I have tried every medication for pn, and many others that my pain specialist prescribed. Everything either did nothing or had unacceptable side effects. Lyrica was the first one that was helping, but I had a serious reaction to it that put me in the hospital for a few days. A real bummer.

A few months ago I talked with a new doctor about the possibility of having a dorsal root ganglion stimulator implant. She was the best doctor I've seen about stimulators, and she talked with the Abbott rep about different ways to adjust the stimulator. At about the same time my pain specialist tried yet another medication and wanted me not to change any of my meds or have the scs adjusted until we could assess the effect of the new medication, imipramine. Turns out that it really does reduce my pain in my feet. Last week the Abbott rep worked with the scs controller and I can feel some benefit.

Even with the scs, Imipramine, and the morphine sulfate contin that I've been taking for several years, I have days like yesterday when my feet have terrible burning pain. I imagine that it was so bad because I was in town for two doctor appointments for my wife, and had lunch. Town is an hour away from home, and driving generally makes my pain escalate. I took an extra morphine tablet and rubbed lidocaine cream on my feet, and the pain abated enough to go to sleep.

Indeed, shopping becomes greatly reduced. At Walmart I can order online and pick up the order either just inside the store or they will bring it to my car.

Until recently I have been most comfortable walking with shoes with extra insoles, and socks. I can't walk barefoot or in footwear without socks. But now it's been hurting if I'm in the recliner with socks on, so I've had to start sitting barefoot. I don't think that the increased pain is an indication that the scs isn't helping, rather that the pn is progressing.

I didn't say what form of pn I have. It's small fiber polyneuropathy, idiopathic, and I'm also in the beginning of autonomic neuropathy. That's worse in some ways than sfpn because of the risk factor, even though it's not painful.

Electric shopping carts can surely make it possible to move around the store much more than on foot. Sometimes the carts are all in use, and sometimes the parked ones are being charged. It's not a good feeling to be far away from the checkout and the battery dies.

I can tell that a cane or a walker are in my future. How long did it take you to get there after the symptoms began? I know that it progresses at different rates for each person.

The medical issues that I have could possibly have a neuropathy involvement, but doctors can't say for sure. From head to toe, I have diplopia, esophageal dysmotility, uncoordinated motion at the back of my tongue, tinnitus, decreased sense of smell, loss of sensation in my face and fingertips and the end of my penis and my feet, sudden urgent urinary and bowel movements, ED, tingling in my legs and feet, loss of sensation in my feet, and severe pain that has recently progressed from my toes to my ankles.

I don't know if there's a definitive test for autonomic neuropathy. I think it's diagnosed by observation of the signs and symptoms - maybe there's a test I don't know about. You certainly are exhibiting signs of AN, specifically balance, elimination, and BP. Do you have any unusual changes in sweating? One of the tests is the tilt table and placing electrodes in various places to to test changes in sweating.

Are you working with a pain specialist or met with a pain therapist? They have been a big help for me. It sounds like you're doing a number of things to keep yourself active. Try not to give up, David.

Jim

Jump to this post