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It’s Cholesteatoma awareness month !





I started suffering with Cholesteatoma in both ears in 2018, and have been through so many ups and down, scary surgeries and hearing loss. It’s been a terrifying journey, at times I thought I would not ever be able to hear ever again, at times sitting in mri scans and ct scans, I honestly thought I was going to die from this. It all happened during covid so I was not allowed anyone to come to the hospital with me for my surgeries. It was such a scary time.

Cholesteatoma’s are a silent disease. They often form without any pain or symptoms, and you only know there’s a problem when it’s too late; when gross drainage comes out of your ears leaving you thinking what is this, when painful infections happen every 2-3 weeks, once you notice your hearing is getting worse and worse everyday. Then you know something is wrong. Even doctor could not diagnose it and left me for 3 years with stupid ear drops, which made things worse. I am grateful for the ENT doctor who finally made sense of it all and diagnosed me in 2020 and set the ball rolling to remove them.

There defo needs to be more awareness of this life threatening disease, before it’s too late.
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Ontheroad · M
Wow! So where are you now in the treatments... the current diagnosis/outlook and treatments? I hate this for you... I had a three-year battle with cancer during Covid and it made staffing at the hospital touch and go.
GLITTER · 36-40, F
@Ontheroad I’ve had operations on both of my ears now so fingers crossed, it doesn’t return one day! Hearing is around 70% capacity in my right ear and still waiting for the hearing test on the left. It doesn’t feel like it’s improved greatly, but at least I know the growths have now been removed. It was traumatic to be involved with surgery and health worries during covid so well done for being brave and fighting through anyway 😊
Ontheroad · M
@GLITTER Good news then... it's hard not knowing if and when it might reoccur. I'm on the other end of it now and have one more annual check with my oncologist just to be sure I'm still cancer-free.

The whole mess took a lot out of me and like you, I'll never be back to where I was, not 100% anyway, but I've gained a whole new outlook on life, and I'm sure you have too.

I'll keep my fingers crossed for you that all future news on it is positive. Stay strong my friend 🫂