Acoustic neuroma

  • 3 replies
  • 20 subscribers


is there anyone who has been diagnosed with this?

I literally woke up 2 weeks ago completely deaf in my left ear. After a long gp and A&E day I was seen as an emergency in an ENT clinic for emergencies.

they thought I had had a virus or a stroke which effects the nerve of the ear/brain. After extensive audiology tests I went back to the emergency clinic to be told I have what they call a dead ear, my hearing has completely been destroyed and will never recover and they have never in their career seen this! Went on to say I probably have a benign tumour which is very rare. I left the department ( I was on my own) in floods of tears . I have had a CT scan I’m unable to have a MRI at this hospital as I also have a medical implant but I can have a MRI if a new scanner can be found which can isolate just to the head. I’m chasing a follow up now as I need a definite diagnosis.

if anyone has got anything to help me with please please respond, I feel so alone at the moment and am so aware of the situation I am putting my family through 

thank you

Charlies Mum 

  • HI Charlie's Mum

    a warm welcome to the online community. So sorry to learn about all that you're going through. Sounds scary!

    An acoustic neuroma is a new one on me. I did however look up the main body of the website for and found this link Acoustic neuroma | Macmillan Cancer Support . I hope it helps unravel some of the mysteries.

    This is a safe and supportive space and I'm confident someone with experience of this will be along at some point. My own experience lies in supporting mu husband through his stage 4 brain tumour journey. This group has been a great source of support to me. There's always someone about to listen who gets it, someone to hold your hand and to give you that virtual hug when its needed. You're not alone. We've got you.

    It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

    For now though I'm sending you a huge virtual hug and lots of positive energy. Stay strong.

    love n hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Thank you Wee Me

    its definitely a very scary time and everything just seems to go so slow! If I can’t get a definite consultant outpatient appointment from the ENT secretaries tomorrow then I will go private and get my answers that way and unfortunately jump the NHS queue.

    The doctor that I saw almost 2 weeks ago put my paperwork through as routine and I have had to chase this all up.. how can you be told you probably have a tumour which has destroyed your hearing overnight and then class it as routine. 
    thank you

    Charlies Mum x

  • Hi Charlie’s Mum

    i see your post was 3 months ago but wondered how you got on? I’m in the same position now, I was told I had glue ear and had to wait 6 weeks to see ENT to then be told I’ve total hearing loss on my left side which is now unrecoverable, waiting for an MRI and thinking about going private. 
    I hope you are well and everything worked out for you x