1. < Neuropathy

Peripheral nerve stimulators

Posted by sparshall @sparshall, Jan 14, 2020

This is a long shot, but I’m looking for people who have used implanted peripheral nerve stimulators (PNS) to control nerve pain. They block the pain signal to the brain. Stimrouter and Stimwave are major brands. These are NOT the same thing as spinal cord stimulators, of which there are many brands. I’m about to have a Stimwave implanted to block intractable pelvic and leg nerve pain.

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Mentor
John, Volunteer Mentor | @johnbishop | Jul 8, 2020
In reply to @fredjan2016 "@jesfactsmon They installed the device on June 29th. I have to wait two weeks for the..." + (show)
@fredjan2016

@jesfactsmon They installed the device on June 29th. I have to wait two weeks for the places on legs to heal before sticking the device pod on my calves. The device pods stick to my legs like tape and only last for a few days. That way you can clean the spot underneath the device pods. So, I have another week before they turn the devices on.

The forgot to tell me that after the surgery my legs would hurt a lot for the next three days. I had to use my chronic pain medication since they didn't prescribe me any acute pain medicine.

Strange thing happened. They woke me up during the surgery to ask me questions about my left leg. Then they said "put him back out" and back to sleep I went. Never had that happen before.

Hopefully, late next week I can provide a more useful update.

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@fredjan2016 thanks for the update - looking forward to hearing some positive reports and hoping it provides some much needed pain relief.

REPLY
Hank | @jesfactsmon | Jul 10, 2020
In reply to @lorirenee1 "@alh123 @rwinney @jesfactsmon Guys, thanks for all your encouragement going thru with my DRG surgery. Alan,..." + (show)
@lorirenee1

@alh123 @rwinney @jesfactsmon Guys, thanks for all your encouragement going thru with my DRG surgery. Alan, thankyou for broadening my perspective about it. I wish it had worked longer for you. It is unimaginable to get such relief, and have it leave. Our brains are so mysterious in how they change and react to things. I hope you guys are having a decent day today. I just woke up, and my brain does not know it's attached to my feet yet, so I should be without pain for at least 10 minutes. Is this nuts, or what? But it seems as I awaken, the pain awakens. Maybe I should just stay asleep all day. A good pain management system! Why I even manage to sleep is beyond me, but I do. I stopped trying to figure things out. Neuropathy and the nervous system are way too complex. Love to you folks. I do not know what I would do without you!!!!! Lori

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Lori, I hope your drg procedure came off without any hitch yesterday. Hope you are recovering nicely. Please let us know how it went and how you are doing. Hope all is well! Best, Hank

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1 reply
jamesinsonoma | @jamesinsonoma | Jul 10, 2020

Fred, Hopefully now after 11 days the surgery pain has gone away. Have the turned on the device. I'm also looking for a device like yours could you please tell us the company and unit you have?
Thanks. James

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fredjan2016 | @fredjan2016 | Jul 11, 2020

@jamesinsonoma They turn the devices on this coming Monday and then the fun starts. I'll let you know how it goes. The devices are from Nalu Medical and you can see the device on their website. The attached file show the wires installed.

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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 11, 2020
In reply to @fredjan2016 "@jamesinsonoma They turn the devices on this coming Monday and then the fun starts. I'll let..." + (show)
@fredjan2016

@jamesinsonoma They turn the devices on this coming Monday and then the fun starts. I'll let you know how it goes. The devices are from Nalu Medical and you can see the device on their website. The attached file show the wires installed.

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@fredjan2016, thank you for being willing to share your x-ray showing the installed wires. Please note that I removed the shared file because it included personal identifying information, such as full name and date of birth. We recommend not sharing such details on a public sites for your security. Feel free to repost the image with the personal identifying information cropped out or blacked out.

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fredjan2016 | @fredjan2016 | Jul 11, 2020

Thanks. I didn't even think about that until you mentioned it.

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fredjan2016 | @fredjan2016 | Jul 11, 2020
In reply to @fredjan2016 "@jamesinsonoma They turn the devices on this coming Monday and then the fun starts. I'll let..." + (show)
@fredjan2016

@jamesinsonoma They turn the devices on this coming Monday and then the fun starts. I'll let you know how it goes. The devices are from Nalu Medical and you can see the device on their website. The attached file show the wires installed.

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The xray...
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1 reply
Hank | @jesfactsmon | Jul 12, 2020
In reply to @fredjan2016 "The xray..." + (show)
@fredjan2016

The xray...

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Wow Fred, a picture is worth a thousand words as they say. Will be sending positive vibes your way for great results on Monday. All updates appreciated. Best, Hank

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1 reply
sparshall | @sparshall | Jul 12, 2020
In reply to @fredjan2016 "I completed my Nalu peripheral nerve stimulator trial and, in short, it was successful. Immediately after..." + (show)
@fredjan2016

I completed my Nalu peripheral nerve stimulator trial and, in short, it was successful. Immediately after they installed the wires, I was able to walk around the house for over 30 minutes. Over the next three days I could walk an hour and only have mild pain in my feet. A lot better than two minutes. On the fourth day I started having small electrical shocks in my right heel. I could only walk for 5 minutes. My left foot was fine, but my right foot would start hurting. The Nalu rep said the wires in my right leg must have moved slightly. On the seventh day the doctor removed the wires. The next day and since then I have missed the stimulators. So, my surgery is scheduled later in May to install the stimulator permanently.

The stimulators allowed me to stand and walk, but I still had the burning sensation in my feet. I had to continue taking the pain medication for the burning, but I can walk again. Potentially, a huge improvement in my quality of life.

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The Nalu device I had shocked me too, and became steadily worse, so much so that the rep told me to stop using it. I was first given defective therapy discs, then those were replaced by two used discs that wouldn't work because they had already already been used by and registered to another patient. I was relieved to have the wires removed. I now have a Stimwave, which gives me 100% pain relief in the targeted area.

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sparshall | @sparshall | Jul 12, 2020

UPDATE: The Nalu device I had caused many problems, including shocks and pain around the IPG, and it never worked properly. I had it removed, and on June 10 I had a Stimwave implanted by a different doctor. The Stimwave works perfectly and is giving me 100% pain relief in the targeted area. Medicare refused to pay for the original Nalu implant surgery or the device itself, but did cover an attempted revision and the removal. (I don't owe anything. Medicare protects patients from unapproved charges.) I was astonished to discover that Nalu put a whopping price of $59,444 on their simple device! Stimwave costs a fraction of that -- and actually works.

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