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Living with Neuropathy - Welcome to the group
Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)Comment receiving replies
The stimulator is from Nalu Med, https://nalumed.com/, and it works on the same principles as a spinal cord stimulator. They install the stimulator close to the nerves that are sending the pain signals instead of targeting them in the spinal cord. In my case that would be just above my feet. A few weeks before the trial they did a nerve block on the same nerves the stimulator is targeting. The nerve block was very successful.
As you can see on the website the implanted device is very small. The size of a dime. It comes with a remote control that allows you to change the pre-installed programs and the intensity.
As the picture shows in my previous post, I have stimulators installed on both legs. They installed wires in my leg while I was out and the bandages hold the wires in place for the trial. The black Velcro pouches on each leg hold the stimulator disk that connects to the wire leads. The Nalu representatives spent an hour with me after the doctor implanted the wires setting up the programs and setting the intensity. It was a little painful setting up the intensity, but I don't feel anything now. I don't feel any difference between when the device is on and when it is off.
My idiopathic small fiber peripheral neuropathy is very painful and without pain pills the pain would send me to the ER. I would say my pain is "typical" for this disease. My feet "tell me" they are really hot when they are not, I get shooting stabbing pains, my feet are very sensitive to touch and they can't sense temperature. I can put my feet in scalding water and not feel a thing. Cold water helps my foot pain a lot.
Prior to the stimulator trial I could only stand/walk for two minutes. I couldn't walk into the dollar store, pickup a gallon of milk and stand in line to check out without having to drop down to one knee due to the pain. Today, for the first time in years, I was able to go grocery shopping for an hour. I had mild pain, but not enough to keep me from shopping. As my neurologist told me this disease will only get worse, so I'm not sure how long the stimulator will keep working for me, but it is better than anything else they doctors have tried.
Last evening I did not take any pain medication before I went to bed. I woke up at 3 AM in very bad pain and had to take a pain pill. So, the device hasn't gotten rid of all the pain, and I still take about half of the pain medication I was taking.
If you want, I'll share an update at the end of my trial. Please contact me with any questions you may have.
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@fredjan2016 My heart just goes out to you. Why do we suffer so, in this life. I am scheduled for a Dorsal Root Ganglion Stimulator next Thursday due to excruciating, incapacitating, foot pain from Peripheral Neuropathy. I pray for relief. I hope your new device helps you immensely. Know that their are other types of stimulators, and that one may not help, and another will. I also know that the surgeon's expertise is crucial. Yes, please keep us all posted at the end of your trial. I plan on doing the same after/during my trial. Dorsal Root Ganglion stimulator is for below the waist only, and when pain is very focal. This means a very specific spot. In my case, it is my feet only, with pain so severe that is unimaginable. I wish you great luck in managing this horrible illness. God Bless, and stay safe. Lori Renee
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@fredjan2016 I see in the physician instructions that the nalumed is not MRI compatible. That was one requirement I had for the SCS implant. The size of the implant and low level invasive surgery are attracted to a lot of people, I'm sure. The SCS implant is quite small, like the size of a small match box. Most people don't really feel the battery implant, but because I'm thin, I can feel it by touch and by lying on it. Mine is just above my belt line. So, the size generally isn't an issue for most people because they have more cushion in that area.
Your symptoms are remarkably similar to mine. I can walk around, but not without pain. Hard surfaces are the worst, and the pain is worse standing still. Lying down or sitting in the recliner with my feet up is an instant elevation of pain. I realized one day that the water in my shower was too hot to hold my hand under it, but I didn't feel it hitting my feet.
The pain is slowly making its way up my legs. Right now it reaches just above mid calf. When I had my appointment with the neurologist 6 months ago, the pain was mostly in the balls of my feet and toes. At my appointment a week ago, the neurologist was concerned that my pain had spread to include the whole foot and ankles and starting up my legs. He prescribed Prednisone, which is supposed to slow the progression of neuropathy. The plan is to take it long term.
I've been taking morphine sulfate contin for more than 5 years, and Imipramine for 8 months. Morphine takes the edge off the pain. A few years ago I tapered off it to see if it was having any effect on the pain. I realized within 2 weeks of being off it, it was indeed helping my pain. So, it could be a lot worse! But clearly, it doesn't do the whole job, and Imipramine has helped. After about 6 months, it began to lose its effectiveness, unfortunately. I have an appointment with the pain specialist Monday, and we'll be having a conversation about what to do next. I've exhausted the long list of neuropathy medications, and all of the pain meds that are available. Imipramine is the next to the last medication on the pain specialist's list, and he told me that the one remaining medication isn't one that he would prescribe because of its side effects.
Do you have any indicators of autonomic neuropathy? That's a whole different set of problems. You said that you have a pain medication. Did you take it very long before starting the trial? Obviously it's not doing the whole job, or you probably wouldn't be looking at other options. I hope that you'll continue to feel the benefit of your implant for a long time.
Gotta go set the table for supper. Do keep us updated through this process.
Jim