Well, I’m sure that some of you are curious what is going on. I’m once again opening my website to provide progress concerning my Acoustic Neuroma (AN). The rock that remains in my head continues to give me problems, and I’m determined to finally deal with the thing once and for all. As a reminder, I’ve had this benign tumor on my auditory nerve begin to give me problems in 2007. I had some loss in hearing and tinnitus. I had a surgery at that time that bored a hole in the base of my skull behind my right ear to remove the tumor. It was a 3-4 hour surgery. I was in the hospital about 3 days, and then returned to work after three and a half weeks. All was good until I started to have some other problems with my taste buds and hearing in 2011. An MRI confirmed that my AN had grown back. So I decided to go with a radiation procedure called Gamma Knife that was meant to zap it, killing the tumor and preventing further growth. It didn’t remove the tumor, but it was meant to stop any further growth. That was the plan.
Fast forward to the beginning of the summer of 2017: I’m running my four mile run like I do every other day, and about mid-run, the right side of my face seizes up like a bad twitch. Of course, I knew what it could be. I’ve been going every 2 years for an MRI with limited results. The tumor looked like it was done for about 6 months after Gamma Knife, but every MRI since gave results that led the doctor to say, “I took it to our board. It looks okay. Come back in 2 years for your next MRI”. I’m part of online groups that talk about this stuff, and I knew that typically you go for a couple MRI before they give you a go ahead for 5 years between MRI’s. I never got that. Also, I had my own software that I used to read the MRI scans, and I could see that maybe the tumor was very slightly larger. But MRI’s have a 3 millimeter band that they consider to be too close to call. So even though my doctor always gave me a confident “come back in two years”, I myself always knew that I’m not out of the woods. That I’m “watch and wait”.
At this point, let me explain three approaches that you have with Acoustic Neuroma’s: 1) Operate and remove it, 2) Radiate and kill it or 3) Watch and Wait. Watch and Wait basically means that you wait until you MUST do something, and then refer to options 1) or 2). AN’s are supposed to be slow growing, and only a small percentage of people require multiple whacks at it. Well, I’m one of the lucky ones.
The tumor lies not only around my auditory nerve, but right next to the facial nerve. That nerve services the facial muscles on half of your face above and below your eyebrow, cheek, above and below your mouth, chin, and the side of your neck. Even some of your tongue. When that nerve fires up, it pulls my face into a caricature of Popeye the Sailorman.
So I turned into Popeye occasionally during heavy exercise. I knew what it was, but I didn’t want to pull the trigger with doctor visits yet. Why should I when it happened so few times. And I knew the options (1, 2 or 3, and there are no other options). But at the end of spring 2018, the hemi-facial spasms (the technical name for becoming Popeye) started to become more frequent. It took less exercise to trigger a spasm. And then in the beginning of June, it happened once in the office. That is when I called up my doctor, and he pulled forward my “every other year MRI” by 6 months. The result was again with that 3 millimeter of growth, BUT with the new symptoms (which now included dulling half my taste buds) they agree that the tumor is alive and kicking. At that time, I was averaging about 7 spasms per day. (I now average between 20 to 30 spasms per day.)
I decided that now is the time to do something about it, and not have to deal with it again in another 10 years. My surgeon, Dr. Mel Field, teams up with a neuro-otologist, Dr. Aftab Patni. We all agree to go with operating. Gamma Knife isn’t good again because you don’t want to go too high with the radiation in your head. (Just like North Korea, too many nukes are bad.) And apparently my healthy cell reproduction must be outstanding. (Too bad I’m not a pro athlete.) And like I said, I don’t want to be doing this again in 8 to 10 years.
So I go for surgery on Tuesday September 25th at 7:30 AM, at Florida Hospital in downtown Orlando, Florida. It’s about a 10 hour surgery. I’ll be in the hospital for 3 to 7 days, and out of work for 4 to 6 weeks.
I know this has been a long journal, but I hope you feel up to speed. Tessa will be updating this website when I can’t. For the next few entries, I will give you some bits and pieces of info on my preparation. But thanks for reading all the way to the end of this entry. You get a free puppy. (Not really, but now I will know who didn’t read until the end because they didn’t ask for their puppy ;-)
God bless, and talk to you soon.
Love you all,