While I don’t have the same ones, I have had some really “screwy” nerve connections and things happening. (My AVM has not gone in the spinal cord, but I’m living with a good bit of “stuff” because the docs don’t want to get close to the spinal cord because of potentially… well, you know.)
After my embolizations in 1986 (yeah, I know, I’m not young anymore), I had one of the most bizarre nerve connections going on - if you went about two thirds of the way between your left elbow and your left shoulder on the outside, I could lightly scratch there and I would feel it in the bottom part of my left ear lobe. No that is not a misprint…
That went away about 5 to 7 years later.
For the last 11 years, I’ve always gotten my flu shot on my left arm - because I never feel it. Nothing, zilch, nada.
I’ve had occasional numbness in the back and right side of my right leg and I have had that for, well, since the 1990s. It comes and goes and I can’t really nail down a “it always happens when…” And the doctors explained what might be needed if we wanted to try to resolve it. I said, “No thank you, I’ll keep my numbness and not run the risk of paralysis.”
And that’s the leg that since my January of 18 procedure has been much harder for my brain to control. Coincidence? I don’t think so.
I have two important nerves - the phrenic nerve - that controls your diaphragm. My left one was severed somehow with all of this. That means I’m basically working with 1 1/2 lungs. And my hypoglossal nerve - that has control of the left side of my tongue - those have both been irrepairably damaged.
Why am I giving you my broken nerve saga? Because I believe that it is of the utmost importance for every single one of us, that we realize that our pace and what we want might and probably will be substantially different than what your system will do.
Nerves, I’m learning, are very different and screwy things. They heal, if they do, at a pace that makes a turtle seem like a speed demon.
And you are not alone.
I’m not alone. Because we walk here together.
Thanks for letting me ramble.