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Does anyone else have a DRG Spinal Cord Stimulator , and have issues ? Mine worked ok, until I fell 10 months ago. My neurosurgeon has done every test imaginable, but it looks like everything is connected. Only problem is that it will not work now. If it is turned up high enough, I feel stimulation , but my feet are still cold and hurt. It isn't helping me at all.
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Seafarer123 janet16241
Posted
I don't have a DRG spinal cord stimulator I have a Nevro HF10 spinal cord stimulator which I think works very differently. But one thing I was warned about with mine was that sharp movement could move the stimulator slightly out of place (they called it "migration"). When that happens, even though everything remains completely functioning, the reduction in pain and neuropathy could be significant.
And as I've worked for over six months now with my pain doctor, with the surgeon who implanted it and with the tech guy from the company who makes the stimulator, I've clearly come to learn that the only one of those three people who even REMOTELY understands issues like this is the tech guy. I've learned that he is the guy best suited to make adjustments to the stimulator (remotely, without having to remove it) that can adjust for migration.
I don't know if your tech guy has been involved with all the tests you mentioned but I would be sure to involve him, and ask him if this was a case of migration or not, and if anything short of re-implantation could help...
Good luck...
janet16241 Seafarer123
Posted
Thank you for your comment. I'm not familiar with your stimulator. What company has it ? Mine is from Abbott, former St Judes Medical. They are the only ones who have the DRG. My neurosurgeon is 1 of the very best around, and was only 1 of 2 neurosurgeons in west Texas, who could implant a DRG. I am also blessed to have great reps to reprogram me. The 1 I've been working with has worked with 3 companies who make stimulators, and is the director in Lubbock. He is so smart that he sounds like a doctor. I've tried turning it off for 1 day, then 3, then 6 weeks. But, when it was reprogrammed, it still does not help my pain. I have RSD in both feet, and my right quad. It is getting more and more difficult to stand much at all, even to cook. I ABSOLUTELY DO NOT want another surgery, but don't know what else to do. I see my neurosurgeon in 3 weeks, to discuss him fixing it.
Seafarer123 janet16241
Posted
Hi Janet,
So sorry for your pain, numbness and weakness. I think my stimulator is a bit different from yours - like you say, your company appears to be the only one making a DRG stimulator. While both of our stimulators fall under the category of "neuromodulation therapy," yours works much differently. Mine is from a company called Nevro, the model name being "HF10." Their big advance over earlier spinal cord stimulators is the use of high frequency (HF) stimulation, which eliminates the "buzzy" feeling that people felt with older stimulator models. But it still uses the approach of lacing wires up beside your spine all the way to the thoracic section of your spine, whereas your stimulator appears to venture off away from the spine, to a specific dorsal root ganglion. To be honest, I had never heard of your type of stimulation until I read your post and looked it up.
My comment was simply trying to draw a parallel between the stimulators that if the stimulation somehow gets out of alignment with the area it is supposed to be stimulating (what my guy calls "migration,"), the device itself might be functioning properly but since it is not "electrifying" the right area it may no longer be helpful. That's the only thing I could think of, but since you say your techs have been intimately involved in trying to solve your problem, I'm SURE they are aware and capable of thinking about any kind of migration issue.
I can also sympathize with not wanting another surgery. While I'm happy with how well my stimulator has worked post-surgery, my surgery itself did not go well, and I wound up back in the ER (and then the hospital for 3 days). I too would not want to go through THAT again. But one thing to remember is that if for some reason it is the stimulator that has failed (and not the stimulating leads), all they have to do is replace the stimulator, not the leads to your DRG. And I presume you had the stimulator pack implanted in your butt, which could be swapped out through a fairly simple outpatient procedure. Similarly if the screws and connection somehow became loose to the battery pack, they can be fixed very easily with a minor outpatient procedure (although I know you said your guy is SURE there are no disconnected leads).
Good luck and let us all know what happens.