My experience with Cholesteatoma . Thread discussing My experience…

Hi everyone i just want too share my experience with cholesteatoma, due to the fact when i was diagnosed with it, i really couldn’t find much on the internet about it. It was a very confusing thing for me to mentally deal with.

My name is ben and throughout my whole child hood life, i had continuos ear problems in my left ear, i had constant ear infections ad no doctor could ever pin point what the problem was. Up till about 1 year ago, i was at the beack surfing, i was then knocked into the sand by a big wave, which i didnt take much notice of.

I got home and once again i was faced with the terrible pain of my ear stinging with discharge, i went to the hospital and was told that it was due to inflammation in my tonsils and that i would more then likely need to get them removed. I was okk with this, if all that was involved to stop these constant ear infections was to get my tonsils out i was extremely happy.

Two weeks had passed and the ear infecction had not stopped, so i went and saw my general GP, he told me it was just water blockage in my ear and i should go to the shop and by some waxsol drops. I tried to explain to him that i have had waxsol drops my whole life and they have never done anything to help certain situations with my ear. Too my surprise i was told to shut up and i might learn something new then asked to leave the doctors.

Two days later i woke up with blood pouring out of my ear and dried up blood on the side of my face, we rushed to emergency as this had never happened before and i couldnt understand what had happened. After a period of time, i was told by the emergency doctor that my ear drum had ruptured and they may need to send me to the big hospital in perth to get steroids injected into my ear drum. The quickest i could get into the head hospital in perth charlie gardeners was in 4-5 days time.

So 4-5 days had passed and i was off to the ENT specialist in perth, they cleaned out my ear put a camera down my throat but could not find anything due to how bad the infection and multiple pollyps were in my ear. So i was asked too come back in another week.

after about 3-4 similair trips and some test sent of too see if the pollyps were not cancerous, there was nothing left no one could do. it seemed as if there was nothing wrong. As i was getting discharged, i was very lucky. The head ENT surgeon walked in to just have a quick look over my ear. Within 30 seconds he diagnosed me with cholesteatoma. i was confused and everything around me felt weird. how could i go through this my whole life , then 1 man within 30 seconds find it.

I was told i would have to go for a CT scan to see if it was cholesteatoma, ad how big it. I came back from getting my CT scan done and was told i definately do have it, and it had eaten nearly every little bit of mastoid inside my head. it was also very close to my facial nerve, and was growing upwards towards my brain. I was told i would be in surgerary within the next few weeks. this was hard for me  too accept.

i couldn’t understand alot of what cholesteatoma was, and i tried to get information about it everywhere. all i could find were certain outcomes it could cause if things were to go wrong. i was told surgery was going to be a long one. around 3-4 hours. i got surgery and it went a lot easier on me mentally then what i thought it would, but surgery went for 7-8 hours due to the fact i had 3 cholesteatomas growing in different directions, i also had one growing down my eustichian tube. There is no for us to find out if any of the three have grown back for a couple of months and i will need a few more surgerys to check.

I just want to let everyone know that cholesteatoma can be a serious issue and i do believe there does need to be more awareness for it.

I hope my story will help a few people out there, and if you have any questions or would like someone to talk to please feel free to contact me.

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