Has anyone been really effected by cholesteatoma? I have had problems with my balance for about 7 weeks now and also my left arm loses function sometimes with numbness and memory loss. I went to a&e as I thought something bad is wrong so they did a MRI and said the cholesteatoma has eaten into the bone and causing inflammation on the brain. So 2 weeks later I had surgery and surgeon said they could see my brain when they shouldn’t be able to (but didn’t elaborate so don’t know why she could see it). My balance is still very off and my arm still feels the same and also feeling very fatigue like I can’t do anything. Feel like I will never feel normal again. Would they have had to do anything to the brain if they could see it, nobody said anymore about so just assuming I’ll be fine if it had maybe eroded a bit of the bone by the brain. If anyone got a similar experience would love to know
I know this is an old post but I am a new member of this site & was looking for others who have hearing loss due to cholesteatomas. I have a congenital form and had 13+ surgeries as a child to remove ctomas or reconstruct my ear. I also had bilateral mastoidectomies in my teens because the ctomas were recurrent & severe & they believed the only option at the time was mastoidectomy. I am now 40 and started getting dizzy spells/vertigo at age 33. It took almost 5 years of complaining & many different specialists to determine that I had a ctoma in my left ear most likely causing the dizziness. They removed it but I have permanent vestibular damage. I have “gotten used to it” over the years but it is tough at times. I don’t really have a solution for you but just wanted to share my experience and say you are not alone. I hope you have since found help? Curious what your diagnosis was (if there was one)?