Cholesteatoma... the hidden disease

For those of you who know, or don't know... just some insight to my life since 2008...


Per Wikipedia.... http://en.wikipedia.org/wiki/Cholesteatoma

Cholesteatoma is a destructive and expanding growth consisting of keratinizing squamous epithelium in the middle ear and/ormastoid process.  


So... this means...  I lost my hearing 3 years ago, to be treated for allergies & swimmer's ear 3 times (with 2 different doctors) before finally finding a physician who could truly diagnose & treat me, Dr. Syms, an ENT Neurosurgeon.  Being that this is a destructive mass... it had killed my inner ear bones, hence, the loss of hearing.  Surgery #1... remove the mass & dead bones.  Surgery #2 (6 months later)... remove the re-growth again & implant titanium bones to act as the real ones to help me hear.  In the words of my surgeon... compared to a home run, we got to 3rd base, which is good and as good as we'll get.  Fast forward 2 years, and I've lost my hearing again.  A revision needs to be done to the titanium bones so they touch the ear drum again.  Surgery #3... last week I go in for a simple revision surgery through the ear canal, only to wake up to an incision just like the last 2 surgeries because the mass had re-grown and had to be removed again.  And the tears flowed... 

Incision site (Obviously, this isn't me.)

When they say this is truly the hidden disease, it really is.  I'm guessing 99% of the people reading this have never heard of this, and I'm right there with you.  Some symptoms are like mine were, but can also consist of facial nerve damage, deafness, vertigo, infection, tinnitus, and headaches.  This is definitely not something that you want to let go. 


So my life the last few years... huh?  What did you say?  Can you sit on my left side?  (So impressive on a date, by the way.)  Every day is a struggle to hear; headaches are consistent due to the fact that it's a struggle to hear every day; it's mentally draining.  Then add in surgeries, and you get a whole other world of dizziness, draining, tinnitus, pain, pounding, etc.  The list goes on.  


Over the last few days, I've been so blessed to be surrounded by family & friends who truly love & care about my well being; it's been amazing, even being 1500 miles away from "home."  But through all of this, I'm also learning something else about myself.  I'm a social person; I'm not meant to be at home and alone.  This is taking a toll on my emotional well being; more so because just when I thought I was on the road to never dealing with this again, it's here, again.  And all I can think about it... so when will the mass grow back?  What's next?  How long do I have to supply my sick time at work to allow for another surgery?  Statistics say that 10-20% of cholesteatomas will recur.  So far I'm sitting at 100%, twice over, in 3 years.


So I ask for your prayers & support.  Do some research.  There are some amazing videos on www.youtube.com, if your stomach can handle it.  And if you know someone who is dealing with some of these symptoms and hasn't found relief, press on.  Don't settle.  And be thankful for what you do have in life.