I had a surgery called a trigeminal tractotomy in 1980. They cut the nerve as close to the brain stem as possible. To get to the brain they had to do a laminectomy, cut the bone to make an entryway.
For many, many years after the surgery I had neck pain. I just assumed that, because of that operation and then 2 implants and removal of them in the same area, what else would you have but a lasting pain in the neck?
I would often mention it to my neurosurgeon but it was usually just a passing thing. The answer if there was one was something along the lines of I am not surprised or is it really bad? It was bad but really bad? No just really annoying. As time went by I found it was also becoming exhausting to hold my head up.
I was in the elevator one day with two friends who were both big folks. Stan is about 6'3 and his wife, maybe 5'4 or 5 (to someone 5'2 that feels tall.)
I said to them "You know I swear you guys are getting taller." Ann replied, "We've been thinking you're getting shorter." That was the camel that broke the back for me.
I saw my neurosurgeon at my next scheduled visit. "I think I am getting shorter and my neck is just exhausting me." He pulled out some neck x-rays he had. "Dr. (so and so) has been concerned about this for a long time." he said. "I am going to call the orthopedic surgeon. I want him to see you right away."
About 20 minutes later I was in his office. As soon as he saw me and the x-rays he said "You have to be operated on this week. You could be paralyzed just walking down the street." He pointed to the films. Instead of a straight neck, I saw an inverted V. My neck was literally falling down.
It took a month to get the 3 surgeons involved to get their schedules to coordinate.
I went to the OR where I was to get clamps placed in the front and back of my neck, from the first cervical vertebrae to the 5th. These would be held in place with 12 screws. It would be a long operation, all done at once. Unless....
Something went wrong in the OR. I am still not exactly sure what but they had to stop after putting in the clamp in the back. The major surgeon as well as residents and others told me "If you stand up you will be paralyzed and you will die. The other clamp has to be in for your neck to be stable. Without it is dangerous for you to stand or even sit up in bed.
That is a long story. It almost gets me to my point.
Another doctor came in my room one day. He was discussing with me and some residents how they could stabilize my neck so it would be safe until the second operation. A "Halo" (That monstrosity you sometimes see with people with neck injuries. It is a metal contraption that screws into the skull and is worn from the neck on up to the top of or slightly above the scalp.) was mentioned, as an option not appropriate.
"Why couldn't we do a halo?" I said
"As I explained it isn't right for your situation."
"But it would be a good idea. I have a theory."
"What is your theory?" I was very surprised he asked but also very glad.
"Well. If we do the halo we have to screw it into my skull. That would trigger my pain but then after a while the pain would plateau. By the time you took the halo out and off maybe the pain would have plateaued out and be gone."
Typical, I learned later, of someone with chronic intractable pain.
We were talking about how to keep my neck, and me, safe from this very dangerous neck situation. That should have been my area of concern. But nothing trumps ways to try and stop the pain.
We did not go with the halo. My feeling was the doctor thought my suggestion was somewhat outrageous. It was - for anyone who does not live with horrendous unremitting pain.
For us, what may seem crazy in a normal context is normal even when the context itself (in my case possibly dying because I stood up) is crazy.