Fake/phantom tonic stimulation sensations
Hi all - my Abbott/St Jude spinal cord stimulator (SCS) was initially implanted at T10 in 2005 for chronic pain related to a cauda equina (CE) lesion (L5/S1). I received tonic stimulation until my 2018 battery replacement/software upgrade, where I was able to switch to burst technology. In 2022, I started to feel symmetrical fake tonic stimulation sensations travelling down my spine, including when the SCS is turned off. These sensations were initially very mild, but have become so intense that they are becoming too much to bear. I have tried numerous adjuvant medications, but none have made any difference, and the fake sensations are actually increasing in intensity. I can't find any published research articles referring to this type of reaction. My specialists have spoken to some international experts in this area, and all are equally stumped. I would greatly appreciate knowing if anyone in this community has experienced these type of fake sensations, or knows of any published cases.
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