June 23, 2009: The Day I Found Out

What I remember most was the total lack of surprise. I sat on a bench outside the MRI building of Cardinal Santos Hospital in San Juan and read the words for the first time:
"irregularly-shaped...mass involving the left cerebellopontine angle region...
"...measures approximately 3.9 x 4.1 x 3.8 cm...
"...consistent with a vestibulocochlear schwannoma..."

I felt no shock, no surprise, no sinking feeling. In essence it was only a confirmation of what I had suspected all along. For the past two years the symptoms had started creeping in -

1) I gradually lost hearing in my left ear, especially the ability to recognize speech. In 2007 I thought something was wrong with my office phone, only to one day hold the phone to my right ear and realize that the phone was perfectly fine and the problem was with my left ear. By 2009 this situation had deteriorated to the point where I simply could not use the phone with my left ear. It was impossible to recognize the words being spoken, there would only be this low, barely audible mumble.

2) My sense of balance was deteriorating, I found myself "tipping over" if I put too much weight on one leg. Walking on uneven surfaces, like asphalt, proved difficult. I had episodes of light-headedness. Quick snaps of the head, like when you glance back to check traffic before shifting lanes, would leave me disoriented for a split second.

In the last six months, more little signs had started to show -

3) Whenever I exerted my neck muscles, like when I bend down to tie my shoes, afterwards I could feel a throbbing at the back of my head, as if the increased flow of blood did not have adequate space to flow, and...

4) laying my head on any moderately hard surface, like a headboard, a leather armchair, or even a hard pillow would produce a mild, dull headache on the backside of my head that seemed to last for days.

So when my newly-found neurologist, Dr. Rogelio Libarnes, suggested that all these indicate the possibility of some kind of mass or tumor growing inside my head near my ear, that initial diagnosis made a lot of sense to me. When I went on to have a brain MRI, deep in my heart, I felt quite certain they would find something. Hence, the lack of surprise when I received the actual results.

Dr. Libarnes was actually my fifth consult. Over the two years since the symptoms appeared I had visited three ENT specialists and one neurologist, and they had all missed the correct diagnosis. In fairness to these doctors I guess it is not incorrect to rule out all the less serious possibilities before considering the more serious ones; and I was also not a very patient patient - which is to say that I admit to being an impatient patient. If there was no "eureka!" moment on the first visit then I tended to lose interest very quickly. So I would not go back for second and third visits and maybe I did not give these doctors enough opportunities to figure things out.

That said, I still found Dr. Libarnes to be particularly impressive. He immediately zeroed in on a minor symptom which the other doctors seemed to have dismissed. When I told him that whenever I turned my head suddenly, I felt that it took a split second before my vision properly "jiggled" into place, he found this to be relevant and spent a good 10-15 minutes shaking my head and watching how my eyeballs reacted. He felt that my eyeballs were moving with my head and not moving independently of my head, as they were supposed to. I felt he also focused on the entire set of symptoms instead of thinking of each separately.

So now I had my diagnosis, which many times is already a third of the battle. But now the real challenge begins..