I was diagnosed with an endolymphatic sac tumour in late 90’s which I was led to believe it had been removed. Alas, this tumour continued to grow and has had detrimental affect on my wellbeing it left me deaf in my left ear, loss of facial function on my left side, difficulty blinking, dry eye, dry throat. 

I had further surgery in 2020 & then again in 2024. To be then told that again on both of these occasions they had missed some. 

Has anyone on here been diagnosed with this or know someone who has?

Im always being told it is a very rare tumour. 

Hope to hear from someone.