I can't thank the members of this forum enough for the great advice, stories of encouragement, and general helpfulness. Like so many others, I was scared to death upon the diagnosis of a 1.7cm AN (protruding from the IAC) at 43-years-old. My symptoms were mild: Unexplainable but easily managed intermittent unsteadiness. It was 7 months between my detection of the symptoms and the first MRI.
After the first doctor's consultation, I decided to get other opinions. The first doctor recommended Translab to be sure to remove the entire tumor. Of the other opinions, both House and the University of Michigan gave the best, same recommendation: Good candidate for complete removal via Middle Fossa with a 50% chance of hearing preservation. Still scared and having had little progression of symptoms (I had started detecting high-frequency hearing loss and the sensation of fullness), I waited. As it had been 5 months since my original MRI, the doctor ordered another. The tumor was now 2cm and protruding from the IAC enough to be nearing the threshold of the doctors' confidence to completely remove it via Middle Fossa.
I scheduled surgery with the dream team of Dr. El-Kashlan and Thompson at U of M. Both doctors were forthright, took the time to answer my (many!) questions, and treated my family and I with the utmost respect. The [longer-than-expected 10-hour!] surgery went extremely well. I can't say enough good things about the doctors or the staff. The experience was better than I could have imagined it would be. I would recommend both doctors and their teams to anyone in a heartbeat.
Post-surgery, my vestibular symptoms were not as bad as they could have been, I believe due in part to the fact that - according to the pre-op vestibular testing - I had lost 50%+ of my vestibular function on the affected side over the course of the previous year and had already begun to subconsciously compensate. I had surgery Monday morning (in ICU Monday night) and was leaving the hospital Thursday morning. Though I did have quite a bit of tinnitus in the affected ear, I didn't seem to have hearing. The doctor's bone conduction test, however, seemed to indicate that the nerve was good and that I would regain some hearing. I had some facial swelling that first week, and mild facial weakness for about 48 hours post-op.
Eight weeks of vestibular PT, rest, and waiting and I was back at work. Erring on the side of caution, I didn't drive until six weeks, but didn't have any trouble getting back at it. Over the course of the following weeks, I would start to detect my hearing (albeit small). I got to the point where I could tell I had hearing in the affected ear, but it was a strong sensation of fullness in the ear and actual sounds were "underwater". Apparently more accurate than I knew, I began hearing noises of fluid moving around in my ear whenever I blew my nose, coughed, moved just right, etc.
I'm now 4 months post-op. As of today, my hearing is incredibly back to Class A. The "fullness" is almost completely gone, and the tinnitus is nearly undetectable. My vestibular function has compensated to "normal" when I'm not overtired or similar. The post-op MRI showed no signs of remaining tumor. I'm completely ecstatic. I couldn't have imagined I'd be able to say this had you asked me back before surgery.
I know I need to remain cautiously optimistic and be vigilant with future MRIs (or symptoms), but today is a good day. So to anyone reading this that may be where I was while reading posts 6 months ago, remember these truths, posted so many times in these forums:
1. Everyone's experience is different
2. You must make the decisions that are right for you
There are many people whose successes - both great and small - posted in the ANA forums from which I found the encouragement and support needed when faced with difficult decisions and so many unknowns. I hope this post gives hope to others as past ones did for me.
