Hello Glanville and thanks for posting,

I am sorry to learn about how this tumour is affecting you, it must be challenging to live with. 

I have to admit that I hadn't heard of an endolymphatic sac tumour before reading your post, but I gather they are very rare so I don't think it will be an easy task to find someone else in a similar situation. Although slow growing and benign, these tumours can cause problems as you know, so surgery may be needed in the future. I'm afraid I can't tell you much about them or what surgery would involve, but I think it would be reasonable to ask to have another chat with the ENT specialist to get some more information. You can usually reach a consultant's secretary via the hospital switchboard and leave a message asking for them to get in touch. Often and especially when a condition is rare, the specialist is the best source of information. 

If you want to give us a call please do. Our number is Freephone 0808 800 4040 and we are around weekdays from 9-5. 

Wishing you the best,

Julia