1st post

[Zobo47]

Hi , 1st post!

symptoms since August 23. Face numbness , hearing loss , eye blur , balance and swallowing issues. It’s take 8 months to speak to a neurologist over the phone. Had a scan last week 29th April. Called 2 days later with diagnosis and told my scan was being sent to ENT. Haven’t heard anything, feel in shock , a bit fed up and frightened , but getting comfort from a few groups. I just want to know size and cause of action but waiting lists seem so long. When does it become an emergency? Thanks for listening 👂

[Daisymeadow]

Hi. I’m sorry to hear you have this diagnosis. It’s terribly stressful at first with all the waiting. Because ANs are generally slow growing there isn’t much urgency to appointments. It’s not easy because we desperately want information. If you are waiting, try and take it as a good sign that it isn’t large.

It becomes an emergency when it presses on the brainstem. It’s all about size and position.

Your symptoms are hard to deal with. If you are having trouble swallowing I think I would be calling up and chasing an appointment. You should get help to manage the symptoms. Waiting time after diagnosis and referral was about 6 weeks for me if that helps x

[Karbob]

Hi get hold of ENT ask where you are on waiting list. Tell them of any changes to symptoms. Offer to go for cancellationwould be my thoughts. Hope it helps. Karen

[musicman5]

I'm sorry you are having to wait so long for your diagnosis and appointment. I had an MRI and then 3 weeks later went for surgery as my AN was large(4.5 cm) and pressing on my brainstem. My symptoms were similar to yours except that I didn't have any problems with swallowing. I live in U.S.