Cholesteatoma - anyone had surgery for this?

[BeBraveAndBeKind]

This is a long shot as apparently only 4000 people in the UK are estimated to have Cholesteatoma but I'm just over a week away from surgery to tackle this and hoped that someone might be able to share their experience?

I'm most interested in recovery time and how extensive the scarring was after. Also if any follow surgery was required - I understand that multiple surgeries are sometimes required.

Yes but it was 30+ years ago so I'm sure a lot has changed since I went through it. Fwiw I don't remember the recovery being too bad at all.

Thank you @fudgecat , that is helpful. Did you have to have any repeat surgeries or follow up monitoring after to check that it didn't come back?

I think I had 3 operations in total as I'd did come back a few times but the last one sorted it permanently

. I’ve had it several times and two surgeries for it, the first in 1975 when I was ten and the second in 2010. In those days they were called chronic mastoid infections rather than cholesteatoma. The first operation entailed me staying in an adults’ ward for two weeks and missing most of the rest of the half term from school to recover. I was left with a severe hearing loss in my left ear but was told that the perfect hearing in my right ear would compensate. In other words, just get on with it, which l did for decades and virtually no allowances were made for my hearing loss, which, of course, was not completely compensated for by my right ear. I also had no left ear drum. It was a success but I had many ear infections, including a burst abscess in that ear when I was thirteen, and many, often uncomfortable treatments. In 2010, the infections were becoming urgent again and I had a repeat mastoidectomy. This experience was a total contrast from what I had endured as a child. I was only in hospital overnight and off work for three weeks. I had more of my mastoid bone removed then my eardrum was repaired and the whole of my middle ear was replaced with plastic bones. It was a complete success and restored my hearing. Unfortunately, my hearing has deteriorated since then for other reasons and I now wear two hearing aids. It is amazing how far surgery has progressed in the last fifty years and I am sure that yours will be an even better experience than mine was in 2010. Good luck. Also, sorry about the italics. I’m not sure how to get rid of them.

Thank you @Violinist64 and @fudgecat It's taken two years to get a diagnosis and an MRI shows quite a lot of damage to my middle ear. My hearing is down to about 30% in that ear. They're going to reinforce my ear drum because it's already ruptured previously but can't say if it will bring my hearing back. I'll be happy if it gets rid of the pain and tinnitus.

Sorry @Violinist64 , I hit post too soon. That sounds like a horrible experience to have gone through as a child! There really was a very cavalier approach to paediatrics in the 70s and 80s!

@BeBraveAndBeKind Hi OP, I’ve had 3 of these surgeries, my most recent was last year. Firstly I’m sorry you are also suffering with this condition, it is really awful isn’t it and as you’ve found, can take a while to diagnose 😫

In respect of recovery time, it will take a few weeks. Your face/jaw on that side will be swollen and that takes around 3 days to come out. Please make sure you have plenty of painkillers in the house! I found the swelling came with throbbing, but ibuprofen really helped. Once the swelling comes out, most of the pain then goes, so it doesn’t last long and it’s not excruciating (but it’s not pleasant). You will most likely have packing/dressing in your ear. For my second op I had a dry dressing in but I had to administer ear drops into it 3 times a day to prevent infection and this was removed one week post op. Last time though I had a dressing left in which was impregnated with antiseptic and left in for 6 weeks (should have only been 4 but they couldn’t fit me in to remove it 🙄), that was awful because the antiseptic (and blood) kept running out of my ear and down my cheek and neck 🤢 so I had to get some gauze and tape and fashion a sort of dressing over my ear to catch it! 🤮 I was so relieved to get it removed after so long but it did stop me getting an infection. I would advise you to keep yourself propped up for at least a week post surgery, I bought myself a wedge pillow and laid/slept on that and it made a HUGE difference to the swelling and I had much less pain, too. When I laid flat after my second operation (didn’t think about elevating myself 🙄), the throbbing pain would wake me up during the night and the swelling was still there a month on so please do stay upright as much as possible. One of my operations left me with what I assume was a bruised facial nerve because for a good 6 months afterwards, food tasted weird. Thankfully that didn’t happen again but last time I woke up with a stiff jaw on that side, which meant I couldn’t open my mouth properly to clean my back teeth for about a week! I had dissolvable stitches all 3 times and the scarring I have is quite ‘lumpy’ but doesn’t bother me as my hair covers it (I can send you a picture of one of my scars if you would like to PM me). It starts from the top of my ear and finishes behind my ear lobe, but after so long they just look like thin, raised white lines.

I was told on my second operation that I would need another one a year later to check that all the cholesteatoma had been removed but then they changed their minds and said it is now done by MRI, which I had and it was thankfully all clear so hopefully this will be the same for you. I hope it all goes well OP, feel free to PM me if you want to know anything else and let us know how you are recuperating afterwards 💐

Thank you @Theoriginalinvisiblewoman that's really helpful, especially the wedge pillow tip! I glad to hear that it's all sorted for you now. You've made me think of getting some cheap pillow cases too - if there's a potential for leakage, I don't want to ruin my nice bedding.

Just want to get it over and done with now!

@BeBraveAndBeKind You’re welcome. Yes the wedge pillow was the biggest game changer in my recovery, most definitely! Good idea on the bedding as yes you will probably find your ear will leak at night, especially for the first few nights. You should have a big bandage on for the first night but I was told to take it off the next day, which was when the leaking started. I also forgot to say not to be alarmed about the amount of dried blood you’ll have in your hair, it looks worse than it is (although I’ve always been told to wait for a week before washing it out, that’s the worst part). Good luck, I hope everything goes well for you 💐

Thanks again for all the advice. 😊

Surgery yesterday. All went well and was home by 7.30pm. The Registrar came to see me when I was only half awake in recovery but it sounds like they were able to rebuild some of the damage and hopefully restore some hearing. Will find out at the three week check but I'm hoping. Tinnitus is still there though at the moment.

Glad to hear it’s all over and successful. Have a good rest, which you will need to recuperate, and, you will soon feel much stronger. Hopefully, you will regain a lot of your hearing but it will probably be a gradual process.

@BeBraveAndBeKind Glad it’s over and done for you. How are you feeling? I found my hearing didn’t return until a good 6 to 8 weeks from memory so be patient, it might not be improved by your 3 week check up. Hope you’re not feeling too bad and your recovery is going well.

Thanks both. I'm a bit wobbly when moving around and tired, but apart from the soreness, don't feel too bad. I slightly over did it pottering in the garden yesterday so being much more careful today.