An acoustic neuroma is a benign tumor that finds a very cozy resting spot upon the Numbers 7 and 8 nerves - one serving the function of transmitting hearing and the other handles the movement functions of that side of your face. What makes my tumor so special is that it already has impacted my hearing - I've lost 36% of it in my left ear already. Of course we don't know how long that process has been in place. But what I do know is that several of the classic symptoms of an Intracanalicular Accoustic Schwannoma - loss of hearing, Tinnitus, and a constant fullness feeling in my ear (best described as that feeling you have when your ears are adjusting to altitude differences and that you can 'pop' it back with chewing or jaw movement) that is a constant 24/7 event. I call it my own private white noise machine. Except that I already cannot make out important word formations when just using that ear - such as with a telephone, cell phone, head set - or even the clock radio in the morning if my good ear is against the pillow. And what I do know is that I want this thing out - asap.
I have had a running joke with our good friend Dr. Barry Kent for the last 25 years. Barry is our ENT go to person. He has always sided on the side of caution and always wants to make sure that every possible stone has been overturned and scrutinized. He is also our family's hero. When our daughter Lauren diagnosed with Bell's Palsy while she and our other daughter Joanna were traveling in France post high school graduation in 2000, (and thankfully that Eileen and I were in the river town of Joigny at the same time), it was Barry that navigated the immediate treatment of Lauren transoceanically with the specialists at the American Hospital in Paris. Anyway - back to the running joke. I go to Barry for an ear related problem and he suggests that I get it further checked out with the current technology of the era (we have moved from x-rays to CT scans to MRIs) with his always suggesting we should make sure that there is nothing there that shouldn't be (that's code for no tumor). So earlier this month when I finally went to Barry's office for a full audiology exam and he suggested the MRI (with contrast), I joked again about what are we looking for this time, another brain tumor? And he of course gave me the only answer he should have given me - 'it's just a precaution'. Well, well, well. Guess what happened on the way back from the radiologist? IAS is what happened.
Benign or not the concept of learning that you have a brain stem tumor is not exactly the kind of news one hopes to hear when their physician calls them. I guess if we're looking for life altering moments this one probably takes a decent high level placement. I think the hardest part so far is to read those words or have them cross my lips - this is a very, very out of body experience.
Next step was my becoming a wee bit obsessed over reading anything I could get my hands on in Internet land to learn about what an IAS is and how it is treated. And to his wonderful credit (and not letting any grass grow under his feet), Barry told me right away that during his residency many years ago, he spent time observing the surgical expertise and talent of Dr. Derald Brackmann - now the head of the House Clinic in Los Angeles. The House Clinic, founded by Dr. James House many years ago, has an enormous amount of experience (and published work and data) on IAS surgeries. Within a matter of several hours Barry had arranged for Dr. Brackmann to call me. To have a physician of his stature on the phone with me within six hours of my diagnosis was just amazing.
Next posting - the confluence of the wonderful medical professionals I have had the privilege of knowing and befriending.
