I just wanted to do my part to contribute something to this message board, as I have taken so much away from it. If you are here, you obviously either have or had an acoustic neuroma, or someone close to you has. I was told about mine on Nov. 5th, 2010 and I was devastated. I couldn't stop crying. The doctor who told me (an ent at UCLA) said it was completely curable, but it could be a surgery up to 14 hours. When I heard that, all I could think of was that my 2 small children (2-1/2 yrs and 14 month old at the time) were going to grow up not knowing me, and even though my family had just begun, it was ending for me. There was just something about a 14 hour surgery that had me in a whirlspin.
I cried the entire drive home (which in Los Angeles is an extremely long drive). After getting home, the first thing I did was google benign brain tumor (I couldn't remember what the doctor had called it, but I knew I would recognize it). Sure enough, Acoustic Neuroma flashed all over my screen. One of the first sites I came to was the ANA site, with a link to the message board. I read that board, it seemed, from start to finish...and the one thing I noticed more than anything else, was the fact that most of the people there were getting on with their lives and were living good. Yes, unfortunately there are negative outcomes in some cases, and sometimes I actually feel a little guilty that my journey has been so easy compared to some others that I read about.
After discussing my options with several different doctors, I was told I basically could choose any of the options for treatment. After speaking to the UCLA doctors, I was extremely scared of the surgical route, but I also was not fond of radiation either. Finally I went to House and saw Dr. Friedman. As you have probably seen a million times on here regarding House and the doctors there, I can not say enough good things about HEI and/or Dr. Friedman. I really do believe the reason my recovery is going so well, is b/c of the experience and knowledge of Dr. Friedman and Dr. Schwartz.
I am currently 1 week post-op, and I am dealing with some pain, but nothing like I was expecting, even though I’m not even sure what I was expecting. The main thing to remember is that your life is NOT ending. Luckily, we live in a day where these things can be and are manageable. Unfortunately, not everyone will have a great outcome with their diagnosis, but I think there are more people who do than don’t.
Whether you participate in this discussion board, or you just read it...You Will Get Support! I honestly do not think I would have come through this with such flying colors if I wouldn’t have been on this site. I don’t post a whole lot, usually only updates; however I read the board almost daily. Even when I don’t post, I feel I get support just by reading what others are saying to a new person, or even someone who has been here for awhile and is experiencing new pains in life. It’s unfortunate that you had to find your way here, but if there is a silver lining in this whole, Acoustic Neuroma diagnosis, it’s that you have just made yourself part of a new family. One that is here for you, through the thick and thin, one that will answer any question they can (regardless how ridiculous you may think it is), one that will pray for you, one that will be here as long as you need it. Take what you can from the board. Participate if you choose. Regardless of what route you take, you will get help and more than likely, without even knowing it, you will give help!
Take care in your new Acoustic Neuroma journey. It’s definitely NOT the end of your life, just a stepping stone to a slightly different one.
