I wrote the other day about giving time.
I was waiting, pretty sure that all I needed was time; for the new changes in the implant to kick in.
I was getting frustrated, as always, thinking, in a tiny corner of my mind, Maybe I can turn it up just a little? What could that hurt? It is the up and down side of your doctor trusting you. I have access to the main computer to do these things, which is great. I do not have to trundle back and forth to the doc each time I think I need to have it changed/they want to make a change. The other side is it is all up to me.
2 days ago, it went haywire again.
I rarely feel the tingling, because the left side of my face is numb. Suddenly, again, the whole left side of my face was tingling, pretty strong - no, very strong. Not as strong as the few months ago back when I was in trouble but again in a way that frightened me.
When Dr. Barolat put it in he was concerned about the chances of seizures, since he had not done this before, and there was no literature or research. I have been on an anticonvulsant for years, for the 'tics' I get from my phantom pain. I never had a seizure. I figure the time is long past for one but who knows? The feeling was so strange, and it was giving me some weird, implant type tingling in the right side of my face too, where no tingling should be. Just plain scary.
I decided first to get the magnet so I could turn off the battery if I had to (hoping I would have the capacity to do something if something happened). Then I turned down the level of stimulation figuring softening it would fix it.
It did not. I had no choice. I was afraid. The tingling continued. The weird feelings continued.
I waited for it to stop. That was strange too. It stopped in stages, starting in my forehead then inching down to my chin until finally, after an hour and a half, by the clock, it all stopped, even the sensations on the right side.
I was back to where I was. Afraid to turn it back on and the dreaded "What do I do now!"
I talked to my company representative who added more bad information. Maybe, she is not sure, they could test the wire. This might tell us if the problem is in the main wire or an extension wire. The problem is, even if it is doable, they no longer make the extension wire. It would take a year, or more, she said, for them to be able to make one for me.
I am willing to wait a year but then another question occurred to me. Could these surges be from the sensory cortex itself? I am waiting to hear back from my neurosurg who will hopefully be able to answer that question. But, as my rep said, how would anyone really know since you're the only one (we know) with a sensory contex implant.
I wrote about clinical trials but never about agreeing to be a guinea pig.
I was happy to have this implant. There were no options left at that point. Dr. Barolat was an angel to think of something unusual, willing to go out on a limb, giving me another chance.
I have had it for 20 years. That is the longest the company believes anyone has had a working implant. (That could also be an issue but then how would they know?)
I know the first implant, in the dorsal spinal column, definitely worked. I vacillate about this one but it does seem as though my eye usage time is less, and the pain more, when it is off.
I hate that there is no way to know a lot of the answers because there are, or were, only 12 other people with this (and most of them had a different form of pain). That said, and not knowing what this outcome will be, I can say, without hesitation, I do not regret agreeing to be an experiment.
What will happen now?
Only time will tell.