I need to write a post for today. Nothing I think of feels right; maybe because I feel I need to be honest about what is going on - and I am not sure I am ready for that.
It looked like the implant was doing better. I changed one of the parameters in a way I had never thought to do in the 20 years I had it. The stimulation was in the eyelids. Maybe, just maybe this was "It".
Experience should have told me it was too good to be true, and not to get too excited too fast. Within a short time I had the same incident of severe stimulation throughout the face that had started the troubles I was having. I reduced the level of stimulation. The problem remained. I turned it off. I still had incidents: the same tingling, the same area.
What is happening? Could the implant still be sending out power even though it is turned off? I turned the amplitude to 0. To be sure, I turned the battery off using the magnet. The problem tingling continued to occur. I turned everything down to the lowest possible level: rate, pulse, amplitude. Still the incidences of tingling.
The only thing left to turn off was the time signature. I changed it from 6 minutes on every half hour to 24 hours off and 1 minute on. (It refused to allow 0 time on). The incidents of tingling have lessened. Although they are still hasppening they are becoming less and less intense and lasting for shorter periods of time. So far they have not stopped completely but that seems very likely.
I emailed my surgeon a descriptiion of what was happening and the question - does it sound more like the implant or could my sensory cortex, where the computer chip is located, be remembering and sending out the stimulation sensations?
The answer was the infamous 'Idon'tknow.' with options. He suggested a CT scan with dye in case there is a problem in the cortex, I could turn the implant off and leave it off, I could consider another electrode. The decisions were all up to me.
He added this caveat: there are NO answers. I could ask many, many people in the world but the chances were negligible that anyone would have one.
So what to do?
I am allergic to CAT scan dye. I do not not want to take steroids to have the test unless really necessary. That would not solve the problem anyway. It might show if there is a lesion in the cortex, for instance, but it would still leave unresolved if it is the implant itself that is at fault.
If there is no way to be assured that it is not a problem with the cortex holding onto the stimulation or not being able to tolerate more stimulation how could I consider merely replacing the implant, or having one put in the motor cortex just next to the sensory area? (I had been told a number of years ago that was not a good idea anyway). If I have it removed, period, that feels like the death knell of hope.
The interim option is to just remove the battery while leaving the implant itself intact. That does not feel like a good answer either. It leaves a number of questions unanswered.
This is one of those times when I want a doctor to be able to say to me "This is what you need to do. This is why and this is what you can expect."
The fact that this is not is one of those big time pain imponderables.