I just realized that the last implant was put in 20 years ago. It seems like yesterday. It is 100% experimental: I am the 12th or 13th person in the world to have it placed where it is placed.
I 'only' have the eye usage and movement pain. It is what keeps me disabled. When surgeons would ask me "If I could only try and help one of the pains which would it be, the touch induced, spontaneous and constant pain or the eye pain? My answer never waivered. "The eye pain." To a one they would say "I am sorry I can't help you with that."
The last implant was a last ditch effort to try and help me. I lost the first and second dorsal column implants, placed in the back of my neck and upper spine, to infections. The first one worked. It took away about 85% of the pain. The eye pain lingered, but the touch, spontaneous, and constant pain was gone. The second implant, in the same place, never worked. Dr. Barolat, my neurosurgeon, told me there was nothing else he could do. "You have too much scar tissue there."
It is a funny thing about pain. Because the first one worked I fought against it being removed despite the infection.
I ran it 100% of the time at 100% of the stimulation. The battery lasted only 7 months because of my usage. And then, to add insult to injury, I went to take off my sweater one day, pulling it over my head because I could, because the touch pain was gone. Somehow in doing so I moved the wire that ran from the battery to the electrodes. Quickly all benefits stopped.
The infection was bad. I was in the hospital, the residents wanting me to have the entire system removed as soon as possible. I fought them, again and again, day after day, week after week. Dr. Barolat went along with me. I felt he was waiting for me to accept it had to be removed. I could not. It stopped my pain. It was not working now or helping but that did not matter. It had stopped my pain. You cannot let them remove a vestige of hope. Even when the risk was meningitis or worse.
Finally Dr. Barolat insisted. "It must come out."
The second implant was put in the same area of my neck. It never worked. It also became infected. Even though it helped not at all it was the same as the first so it came with hope. Same scenario "No!. You cannot take it out!" About three weeks later I was told I had no choice. Back again to the O.R. to have it removed.
Dr. Barolat told me he could not put anything back into the same area. There was too much scar tissue. "I am sorry but there is nothing else I can offer you." No. I was not going to accept that.
Thankfully, being the person and doctor he is, neither was he. One day he said "I have an idea. What if I was to attach the computer chip to the outside covering of your brain, to stimulate the sensory cortex? It is rarely done, about 12 in the world and usually for pain that comes from a different part of the brain but if you are willing to try I'm willing to do it."
I still had all the tn pain. It was fingers crossed, not only if it would work, but might it cause me to have seizures or other potential bad side effects?
It did not. Nevertheless, the fear that it would was there. Even when I had the battery changed, a few weeks ago, 20 years after the implant was placed, I worried.
The battery had been running very low for quite a while. Would putting in a strong new battery set off seizures? I would be lying if I told you I was not petrified of that possibility. It was a waste of fear. I am fine. It has not 'hit' yet, at least not to the degree that I am noticing a difference. I would never have it removed though, just in case.
An experimental surgery. How far would I go to get relief? To have a life back.
The other night the eye pain was very bad. It would not simmer down, much less stop. Oh man, it never changes and there is nothing anyone will do for me anyway. The next thought caught me offguard. Well what if someone came along with another idea, another experiment? Would you do it? Oh, no. Never, I'm too old to go through all this again. That was the first answer. The next surprised me. Why of course I would. How could I refuse anything? You're either okay with the pain or you're not and I for sure am not. I need it to stop. Logic dictates "No." The pain, emotion and fear of having the pain forever forces a "Yes."
I write in my book and in support groups: Never let the pain make your decisions. I have and it has cost me, greatly.
Pain speaks for itself, louder sometimes than any other internal or external voice. Wanting pain to stop is a major biological necessity. Chronic pain is a different animal then acute pain. It's voice needs to be softened so thought and reason rule the day. And any trips you agree to take to the O.R.