I had a successful mastoid surgery, can I help anyone?

Hello, My name is Chris and I just had a surgery on Tues March 27, 2018 for Cholesteatoma. They removed the cholosteatoma, but stated to my wife that there was too much sweeping to do my ossicular chain reconstruction so I have to go back in 6 months to have that done and they will also check to make sure the cells are gone. As well they stated to my wife that my cholosteatoma was bigger than they thought and that it exposed my brain and facial muscle connected to my jaw. I am not happy about the price I have to pay but thankful to my Father in the heaven that I did not get meningitis. I’m researching it now, but thinking that since the cholesteatoma exposed my brain there is a real possibility that I could have gotten meningitis. It was hard for me when I saw the incision. I have had surgeries, stitches l, etc before, but they all were able to be hidden. What is your experience with the scar and how noticeable it is. 

Hi,

Just wanted to reiterate all the compliments - your post is brilliant, and I came to it because, well, I'm concerned about my prognosis too.

My situation is that I'm nerve-deaf in my right ear after a bad infection aged 5. In my late 40s I was diagnosed with a retracted eardrum, pocket and cholesteatoma in my good ear. Very worrying, but it was dealt with quickly and efficiently (I'm in the UK with our wonderful NHS). No need to stay in hospital overnight, no painkillers, just a checkup to remove the tiny scab covering the pocket.

However, due to the pandemic, I haven't had my annual checkups for two years, and noticed I couldn't hear too well in my good ear, which is usually a sign of wax. This was confirmed by my GP, who also said there was also a mild infection, so I was prescribed antibiotics and ear drops (which, as anyone with a pocket will tell you, is really not a good thing to do, but I went with it anyway).

A week later, still not sure anything had changed, I contacted the GP again, who prescribed another course of antibiotics and drops. Not happy about this, I decided to take matters into my own hands, so I went to a local audiologist, who gave me microsuction and discovered a recurrence of the cholesteatoma. Argh.

So my situation right now is that, again, I'm very worried about all this, as I only have one good ear. I'm in my early 50s and I assure you, there's no age at which you don't worry about this sort of thing. But, I'm hoping that again, this will all be dealt with professionally.

So I just wanted to echo the other comments here. Cholesteatoma does not mean a terrible or life-changing experience, but any surgery is anxiety-inducing and that's understandable. Thank you so much for sharing your good experience. Mine has been good too, and although I'm apprehensive about going through all this again, I'm hoping my next one will be as well.

I've had 2 successful mastoidectomys. I was 3 years old, it was 1943. a lot of my mastodon bone was removed in my left ear, leaving me deaf in that ear. I was always told, not to get water in that ear. I almost drowned when I was 10 years old. because I got water in that ear, a year later, it was necessary for a more radical mastoidectomy. the surgeon had to remove more bone that was close to my brain. I was warned to not get water in that ear again for fear of meningitis. That surgery was painful afterwards because, 3 times a day, I would have to have drops of alcohol poured deep in that ear. I had that ear checked yearly after that with no further problems other than being deaf. then in 1965. I was diagnosed with a cholestealtoma pearl. ENT had me put drops in that ear several times a day for 2 weeks. He then used an instrument to remove the pearl through the opening of my ear. since then I haven't had any regrowth or any infections. I've always been deaf in that ear so I was quite surprised that in 1991, my ear popped and I began hearing out of my left ear. I could even hear the sound waves as they entered the ear. I had my last hearing test in 2014. ENT ordered a CT because he couldn't understand how I could hear when there's nothing but a big hole in that ear. I'm a Christian and I believe God has given me a miracle. I have a copy of the hearing test and a copy of the CT proving, there's no evidence that hearing is possible but the hearing isn't 100% but it seems to be getting better. in 2019, I had a cleaning. The doctor used a suction type instrument. This is 2022 and I have been having balance issues and I use a walker because I'm 84 and don't want to fall. I have another appointment with a ENT specialist in November. I pray that all is still well with my ear. Hope someone is encouraged by my story.