35 year old's experience with cholesteatoma

[Guest guest]

first, i am so sorry your kids are having to experience this horrible disease. i have had the cholesteatoma removed and bone implants implanted. recently i just learned i have an air-bone gap and will have to have the implant surgery repeated.

In a nutshell you feel like you have a monster in your head. before i had the cholesteatoma removed i felt like i had a microphone in my ear every noise hurt. quiet noises like paper crumbling made my skin crawl. I was ill all the time. i had no idea what was going on. i felt like i was losing control. life was bad and everything annoyed me. at the time my kids were 5 and 6 and very loud and active. it was hard. there was noise that hurt me the most and it was clapping. i went to a dance and the drummer felt like he was drumming on my ear. in a crowd the voices ran together .l couldn't tune into one voice. it was awful!! i hate that these kids are suffering. my first surgery was the removal. it took 3 1/2 hours. luckily it hadn't invaded my mastoid. i was nauseated and my equilibrium was disturbed. it only lasted for 2 days though. i really felt better than i expected. the hearing loss was the worst part. before i had a little which gave me the sense of noise direction. after the surgery i had no idea where noises were coming from. i am a nurse in surgery. when i returned to work, i could not distinguish where a phone was ringing. my sense of direction had diminished. i would have to pick up the phone to see if it was the one ringing. it was a strange feeling.also we wore mask and i couldn't read their lips when they were talking. so it helps when you look at the person who is talking. the worst part was when i would lie down at night when everything was quiet all you can hear is the blood supply and your pulse. i could never get peace to rest. of course the harder you try to go to sleep the more i heard those noises. the noises inside of my head was the hardest part for me. the packing was uncomfortable but when it was removed that helped alot. i tried hard to live a normal life but you just can't do that. you have experienced this with your kids i know you felt the pain with them. i was hoping that i could explain the feeling but i just can't seem to put it in words. all i know that it has been horrible and it's not over yet. the only advice i know to give to you parents with children going through this is to be sympathetic and keep things as quiet as possible. one sound at a time. tv and people talking at the same time was very annoying. i found that a fan helped me sleep at night. it seemed to drown the noises that i was hearing in my head. people also felt like they had to yell because i couldn't hear ,but that seemed to be worse. listening was easier for me to be close to the person talking and reading their lips. the loud voices seemed to be unbearable i just wanted to scream but i knew it would just hurt. please try to be understanding with these children. their pain is more than not hearing.