Ear Extravaganza pt. 2

So this is the "fun" stuff. Actually it is not fun at all but it is an interesting story to tell and many people find it fun to listen to or gross either one works. So last post, I shared the story of discovering the disease and what it is and how it can effect me.Now i am going to write about the adventure that got me to where i am today!

After the initial discovery I underwent 4 different procedures in Ohio, where i lived at the time. And besides the fact that surgery sucks, is that the surgurys all were a dramatic fail! with that said, When we moved to Michigan for my dads job, we got into another ENT office in Lansing. I had another few surgeries with him. He also failed even more dramatically than the other doctor.
We determined it was too big of a problem and we needed to see a better guy.

I was then referred to Michael LaRouere from the Michigan Ear institute, and he was very confident that he could "cure" me. So he performed three surgeries i believe, on me that were more invasive to try to get all of the cells during surgery. When he got in there he found that it was much more than he expected. Cholesteatomas can be the size of a pearl or the size of a baseball ball.

You can't actually see the cholesteatoma on this X-ray 

He found that the cholesteatoma had spread all throughout my mastoid and destroyed my whole inner ear and was ONE MILLIMETER FROM MY BRAIN and it had WRAPPED ITSELF AROUND THE FACIAL NERVE.
This is so terrifying! So they had a huge challenge to get the whole cholesteatoma without toughing the brain or facial nerve plus trying to keep as much of my hearing intact as possible. In hindsight, if I did not have that surgery the day that i did there was a huge chance that i could have facial paralysis and / or brain damage. And they would not know what happened with my brain or facial nerve until i woke up and spend some extremely boring and painful time in the hospital, but they already knew that i had lost all of my hearing. Thankfully it turns out that i had no brain damage or facial paralysis.

Three years later we find out that the Cholesteatoma has come back, this time it has grown out of the capability of my doctors hands. So we had to go to the University of Iowa Children's Hospital in Iowa  City and see Dr. Bruce Gantz. He does a different kind of surgery where he, shaves the right side of your head, opens you up a little above your ear in a semi circle, removes the cholesteatoma and takes some skull, shaves it down to sawdust kind of, and uses the bone to fill the all the space that the Cholesteatoma grows that is harder to reach. And the surgery was super successful but still no hearing. Six months later i have another surgery with Dr. Gantz to put hearing devices in my ear that is supposed to help me hear better. That ultimently failed.
After every surgery my head is wrapped in an inch deep layer of head gause and a big cone around my ear and it makes you look so funny because you can't open your mouth and you have a bunch of tubes coming out of you and for ear/head surgery you had to have a tube from your head, its a sad/funny type of thing (trying to keep it light). And the recovery is awful but i won't get into that.

So in the end i am Cholesteatoma free and half deaf, not ideal but better than brain damage and facial paralysis. Now i just go to Iowa a few times a year to make sure i'm okay!
3 Cholesteatoma surgeries
3 Surgeries to try and restore hearing
5 Other surgeries to prevent Cholesteatoma
THE END