Hello I have a question, but first a little background:
I starting losing my hearing/tinnitus in April 2010, but I was in prison, so it was ignored for a few months until I complained and got my audiogram July 2010.
I felt my hearing was decreasing, but couldn't get them to redo the audiogram. Finally they ok'd it, in Spring of 2012, but I was transferred to a different facility. That facility, after 4 months, finally sent me to a local ENT who found my hearing had decreased, but couldn't see any reason why. He recommended an MRI to rule out AN. The prison denied it since I had less than a year left of my sentence; they figured it could wait.
I was released Oct 2012, had the MRI Dec. 14 which showed a 3.1 cm AN on the left. Richard Gurgel ENT and Joel McDonald Neurosurgery from the University of Utah were to do the procedure.
Due to my insurance changes, the tumor size, and my nearly-complete hearing loss, I went for an immediate trans-lab surgery on Dec. 26, went home on the 29th.
Surgery took 12 hours, 2 of which to just drill through my skull (didn't surprise my wife!). Apparently my face on the left was responding just fine until the very last hour of surgery then the facial nerve went 'dark'. So I woke up with complete paralysis of the left side of my face. My neuro was not happy since it was good for so long during the surgery
Due to some significant swelling around my ear (think Sloth from the “Goonies”) and some behavioral changes, according to my wife (I was an ass!), I was re-admitted via the ER on 12/30 for aseptic meningitis after a lumbar punch that brought down my inter-cranial pressure from 2x normal back to normal. I spent 2 more nights in the hospital where they re-sewed more stitches to keep any oozing CSF from coming out, and went home on 1/1/14.
I started leaking CSF about 2 days later and went back to my ENT's clinic for even more re-stitching, and then a follow-up in 5 days.
At 5 days, with no stoppage of the leaking, I was re-admitted to the neuro ICU for a lumbar drain on 1/7. They re-did the fat-packing procedure/surgery on 1/10 (so I have 2 belly scars) and I laid around in the ICU for 4 more days and went home 1/14.
After the surgeries I had no dizziness, two bouts of nausea/vomiting (one when they over-drained my CSF), was up and walking the same day as both surgeries, was driving 2 days after the final discharge, and went back to work on 1/26. Since most of my work is on the phone, if someone can't understand me I just pull my left cheek tight, and all is understandable. My ENT thinks that since my hearing loss happened so quickly, that I had an aggressive tumor and had already compensated for any balance changes.
So here's the question, and this is directed to anyone who had complete hemi-paralysis immediately after surgery and has completely, or at least mostly, recovered facial motor function:
--What was the first signs that things were coming back?
It's been less than a month since the second surgery, and I have been feeling what could be best be described as 'cramping' in different parts of my face, there has also been visible twitches, usually 1-2x/day. Is this what others have experienced?
I would love to hear, in annoying detail, what those who have recovered felt along the way, especially early on.
Sorry for the long post.
Thanks in advance, and I wish you all wonderful recoveries.
