So, you are probably asking: What the hell is cholesteotoma? When I tell someone that I have cholesteotoma (c-toma), I am usually met with a blank stare, a quizzical gaze at best. The predictable follow-up questions inevitably are either choice: (a.) "Oh...you have high cholesterol?" or choice (b.) "You have cancer?!"
Contrary to its ridiculous name, cholesteotoma has zilch to do with cholesterol or cancer. In layman's terms, cholesteotoma is a benign tumor which accumulates in the inner ear, usually behind the ear drum. The tumors can corrode everything within their pathway, tornado-ing the entire middle ear cavity and engulfing everything in their vicinity. My husband refers to it as "The Pac-man Disease"--visualize Pac-man venturing through his maze, gobbling up every dot obstacle he encounters, until he reaches the grand-prize: the cyber-cherry.
A mild version of the disease causes discomfort, frequent ear infections, or even hearing loss. A more severe version of the disease can lead to meningitis, brain abscess, or even death. Cholesteotoma fucking sucks (and if you are easily offended by my crass language, then my blog is probably not for you). I have provided some objective, medical literature for your review:
http://en.wikipedia.org/wiki/Cholesteatoma
http://emedicine.medscape.com/article/860080-overview
http://www.entnet.org/HealthInformation/cholesteatoma.cfm
I decided to begin this blog for numerous reasons, but firstly, my ears need to vent. For eight years, both of my ears have been filled to capacity with steroid drops, antibiotic drops, various medical apparatus, including a micro-suction device that feels like it is sucking out my brain (picture a miniature hoover vacuum in your ear). My ears have been reconstructed, dissected, bisected, fitted with prosthetics and hearing aids. I have undergone four surgeries and hundreds of medical (debridement) procedures. In medical terms, I have undergone a Myringotomy with Ventilating Tube Insertion, a Tympanoplasty with Mastoidectomy, and a Tympanoplasty with Ossicular Chain Reconstruction and Prosthesis.
The c-toma tumors have completely eroded both of my ears and I now suffer from permanent conductive hearing loss, vertigo, tinnitus, decreased taste buds and numbness in the back of my mouth. After all of these procedures, my c-toma has recurred in both ears. My ears are sick and tired of being occupied by a foreign invader and badly want to kick these free-loading squatters to the curb!
I also started this blog as a way to reach out to others who have been diagnosed with cholesteotoma. Because this disease is so rare, there are so few resources and supports available for those diagnosed. I encourage those affected to freely post any comments/thoughts/advice/opinions. Also, disclaimer: I am not a medical professional and this is NOT a medical blog, by any means whatsoever. This is a safe-ear-space formulated to enhance the lives of those afflicted. My goal is to use humor and other distractions as a healthy coping mechanism for this disease. I hope that you will enjoy reading my blog as much as I will enjoy venting!
