Since I'm not sure just how many people will follow my journey...I should probably start from the beginning of my hearing loss to fill those in who don't know how I got to being deaf... it has been really quite a crazy year!
I have an extremely detailed version (for anyone who is really interested, let me know and I can email it), but figured most would prefer the Short-n-Sweet Summary. It's actually only somewhat short - it is a little difficult to squeeze a whole year of medical roulette into a few sentences!
I only started to lose my hearing at the end of May 2008 (after I had just turned 30 in April). Before that, I had very excellent hearing - I think better than most people because I would mention little noises I would hear and others didn't hear them. On May 23, I returned home from a month long trip overseas where it was quite noisy. That night I tried to watch a movie but the dang ringing and popping and roaring in my ears (which I now know to be tinnitus) wouldn't stop! I had to keep turning the volume up - I couldn't hear over the noise in my head. I thought maybe my ears just hadn't equalized...but a week later when it still hadn't gotten better and I kept noticing how often I kept saying "what?" and asking people to repeat themselves in noisy environments. I decided to get a hearing test done in the medical office at work . Yep, it was bad - work handed me the forms for Workman's Comp and said "go see an ENT". Which I did immediately.
Within two weeks of being home my hearing loss was around 30% and from there just continued to get rapidly worse. Throughout the summer I saw several doctors, tried several different medicines (antiviral, antibiotics) and all variation of steroid treatment (oral, intratympatic injections (where they poke holes in your eardrums and inject the steroids directly into your middle ear! very very painful!), and high dose IV, which required a three day stay at the hospital). I was basically tested for everything under the sun known to cause bilateral hearing loss (some things multiple times) ,everything came back negative. Most of my treatment was tried by two different doctors at Georgetown Hospital. Finally when nothing seemed to work. - I got my first pair of hearing aids in September (I was excited I could get the small ones that are completely inside the ear canal)...but by end of October, I needed the strongest hearing aids on the market (I was past a hearing loss of 80%). Still frustrated the doctor's couldn't help me at Georgetown, I went to Johns Hopkins.
The Dr at Hopkins I who treated me said there wasn't much more to try. He didn't repeat any of the previous tests, but put me in touch with a Dr at U of Iowa doing NIH funded genetic research on hearing loss...I sent them a DNA sample. DNA results also came back negative - which was great, but I still had no definitive cause for my hearing loss. I was 100% healthy except for the fact I was going completely deaf with no way to stop it!
The ultimate belief is that my hearing loss was a combination of noise exposure and possibly an unusual virus I caught (but didn't know because I wasn't sick otherwise). So, in December - I gave up looking for a cause or a way to reverse my hearing loss (as this wasn't possible anymore). And instead turned to the possibility of a cochlear implant (CI) with the hope of being able to hear again. I went through the multi-step evaluation process in January - and failed with flying colors! That's right I said failed - but as in my hearing was so now so awful that hearing aids provided no benefit. In fact, during the speech comprehension test given at normal conversation volume with my (strong) hearing aids, I only got 4% correct in my left ear and 8% correct in my right. Basically I was a perfect candidate for a CI!! I scheduled my surgery for March 16th, just two months of waiting to go. (More on CIs, and my surgery later).
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