Hi all. Just found this group. Looks a great place for a very unique community...
I first learned of my AN around September of '07. My wife always told me that I never heard half of what she said. I guess she was right!
![Smiley :)](https://www.anausa.org/smf/Smileys/classic/smiley.gif)
She insisted that I go get my hearing tested. Right side was perfect. Left side dropped like a rock after 3KHz. So, I did reasonably well with speech but had issues. My ENT didn't even think of an AN. My wife insisted on an MRI. We found it. 25mm. Not too bad I guess. The ENT was truly ashamed.
Short story short...by the time I found myself at UCLA wearing a mask and with my head bolted down to a machine that was going to zap this thing into a dead lump I lost all of my hearing on the left side. That was December of '07. Yes, in less than three months I went from having partially useful hearing on the left to none.
I went for the fractionated radiotherapy. That was a fun five weeks of driving to UCLA, I'll tell ya. Near the end of the treatment I got happy 'cause I could hear something if I scratched my left ear. I should have taken a hint when the doctors didn't show any reaction when I gave them the news.
It's been a almost a year. A good-news/bad-news year. I quit Kung Fu. I can't stand on one leg any more. Hey, maybe it's time for Judo, where falling with class is a virtue!
One cool aspect of being SSD is that, when one of my babies cries I can hold him or her on my left side and it really doesn't bother me as much. Comes in handy sometimes with adults too!
![Smiley :)](https://www.anausa.org/smf/Smileys/classic/smiley.gif)
I don't want to make light of this. It's serious stuff. But, if you can't make fun of it, it would be difficult not to be angry all day.
I am one of those guys who never likes to go to the doctor. Early 40's. Never been seriously sick. Never had the need. Last year was a key turning point for me in that regard. First a botched colonoscopy that had to be repeated (my fault, I didn't drink all of the horrid stuff they make you drink). Then the AN, several MRI's and five weeks at UCLA. Joking with my wife I'd tell her that I'd rather have two colonoscopies with a cold camera up my behind than have to deal wiith AN problems.
Anyhow, now for a couple of problems that are of concern. My second MRI showed the AN had grown a couple of millimeters (six months after the treatment). I am due for another MRI next month. We'll see. I have been suffering with horrific headaches all year. They come and go. Mostly during the night. I went from not taking any medicine ever to popping pills every day. I do a regular dose of Advil every morning and repeat it at night almost every day.
Also, in the morning, usually while taking a shower, my facial muscles on the left side have been known to spasm or tighten-up for 20 or 30 seconds at a time. This is usually preceeded and followed by twitching, mostly around the lip and lower eyelid. What to make of this? Does it go away ever?
In the last couple of weeks the muscle spasms have gotten more frequent. It was common to have one in the morning. Today I had five. I've also noticed that I can feel my pulse pumping inside my head and feel craneal pressure generally before the spasms happen. The spasms are strong, almost reaching the strength of a cramp.
I have full control of the left side of my face, yet the sense of touch and taste are decidedly reduced. Today my left side feels mildly numb to the touch. It's different every day.
If this is going to be part of my life I need to come up with an explanation real fast. I frequently give talks in front of dozens of people (seminars, demos, etc.) as part of my job. I can see standing in front of 200 people looking at me when I have a face pulling episode that leaves 1/2 of my face looking like the joker for 30 seconds. The best I've come up with is "I was left with a pinched nerve after the war" ...maybe I can make dumb joke about it and it could work..or maybe I can have a couple of quick Powerpoint slides to show to either explain or distract. Pamela Anderson should do the job (sorry ladies, it's the truth). "Hey, how did these slides get into my presentation!" Maybe they won't look at my ugly face for just enough time for the muscles to relax.
A friend of mine saw it about a month ago and got really scared 'cause he thought I was having a stroke. Come to think of it, I need to go to the dentist. I can only imagine what the poor guy might think if I have an episode while he is drilling away!
Oh yes, there's the hearing issues too, going to busy restaurants or noisy environments just stinks. I just can't understand what the person in front of me is saying to save my life unless I have a wall or other hard surface on the right to bounce their sound into my riight ear. I'm sure this is a common experience. How do you deal with it?
Does anyone have any feedback on the face-pulling business? Can I expect it to go away with time, as the nerve heals from the trauma of the treatment?
Also, I"ve been thinking of going for a TransEar device to try to restore some degree of normalcy. I am concerned that these devices might not be designed for active life styles. I like to go fishing and kayaking with my kids. Does anyone know if TransEar can survive a good dunking?
Thanks,
-Martin