Diagnosed in May, hearing loss since Christmas, gp thought it was glue ear Saw a ENT specialist in April and paid private for MRI scans, diagnosed AN 2.1cm x 1.9cm
He has referred me to NHS Multi Disciplinary Team at Southampton
Awaiting to hear from them, I was told they would confirm referral , Appreciate there could be a wait, just want to know
I'm in the system .
Hi
Good to know you’re in the system.
Was hearing loss your only symptom?
I’m waiting for mri. I have hearing loss in left ear, tinnitus again in one ear, headache and balance issues. The wait is awful. Keep us updated with your journey. Good luck.
Gradual loss of hearing, fullness in ear, had ear ache a lot, the anxiety and stress of it was making a pulsing noise in my ear, the ent consultant said it might be stress and it did calm down when I calmed down!!!So I stumped up 280 pounds to see a ent consultant* months wait instead of 10 week NHS, privately a he referred me for MRI scans, 8week wait so I forked out 436 pounds for a mri scan , seen in 8 days, another 100 pound for Contrast,
Paid out of my annual bonus
!!!! I do get headaches around top of ear/head area. but painkillers seen to calm it, ha r noticed a bit of imbalance , tinnitus I have had for 20 years after a fall at work, I have managed to live with it, but with AN has .are it more noticeable
Currently have been referred on NHS to Southampton MDT.
The wait is on.
Hi, it’s a bit of a shock isn’t it? But I hope you will be reassured that we live very well indeed with our squatters… once we adapt to the changes they bring. Losing hearing in one ear can be very discombobulating at first, and affects us in all sorts of ways, but there is help and support out there. Right now, the best thing you can do is to focus on at the ways to nurture and look after yourself. As ANs are almost always very very slow growing ( and 40% don’t grow at all after discovery) they tend to put you on watch and wait for 6 months to see if there is any growth. They may offer a single dose of radiation treatment which is successful in 90% plus cases in stopping growth, ( I had similar size 25mm and had 3 sessions) My only symptoms were sudden onset of one sided tinnitus at the time of diagnosis. There is good info out there from BANA and also support via brainstrust who have specialist support groups for Accoustic neuroma hosts! Peer support and hypnotherapy to help. You’re not alone, this will not kill you, you’ll adapt and be okay. I still have my moments of 😱 but life is better than it’s ever been! 💐
If you haven’t heard in a couple of months I would phone them to check they have received the referral. The hospital I was referred to in June 2022 had the referral sitting on their system but hadn’t actioned it when I rang them a couple of months later. They were very apologetic and organised an appointment for the following month. Mine’s 1.9cm and I’m on watch and wait. Next MRI March 24. I have lost most of the hearing in my left ear but things are much better now they have given me a hearing aid.
thanks for your reply, its just waiting isn't it. In fairness its only been 3 weeks since my ENT consultant sent referral and scan images to MDT Southampton, his secretary said they usually inform you of receipt of referral so I am sitting by the letterbox! Will give it a couple of months like you say.
I have lost most of my hearing in left ear, struggle sometimes with it, I have tinnitus which actually began when I had a fall at work about 20 years, have learnt to live with it, but have noticed it more since losing the hearing.
Will keep you updated
Yes, the waiting is definitely the worst part. Hope you hear very soon.
DizzyDolly66 Well progress just received appointment for 16 Aug , the next step in my AN journey begins!
Hi Rich. That's good. I was just about to say that referrals are normally acknowledged within a month. Appointments are rather longer, so 16th August is good. Good luck!!
That’s very good news. Hope it goes well.
hi rich806 I had audiology today for another hearing test and speech test and discussed a different type of hearing aid but was suggested I wait to see what treatment I will be having. I didn’t do to well with the test and she said she was sending results to ent. That was this morning and by teatime I had a text from ent asking me to go for appointment with them on 14th August. Even though I have already been referred to mr Thomas? Just eye specialist on Monday then hopefully I will know more about what’s going on. Hope your doing ok today.
hi rich I had my eye appointment today, good news the tumour isn’t touching the optic nerve. But the nerve does look lumpy and bumpy apparently. I do have a build up of pressure due to the tumour which is pushing my eye forward slightly. He said it will resolve when the tumour is dealt with.
Glad your eye appointment went aswell could be expected,tumour is not touching nerve,must feel weird pushing your eye forward, hope it is not to uncomfortable for you.only pressure I feel at times is just behind my ear, sometimes, no issues with eyes yet.Update, re hearing and speech test, apparently I only need a speech test, hearing was done at first ent appointment.
You mentioned in your last post that apparently they like to have this done before neurology appointment.Still waiting to hear when Speech test is.
SoThought I would be cheeky and rang the Dorset Audiology to enquire waiting time, 2 months which would fall after my neurology appoint at Southampton.
But I did mention this to lady and she said, well we better fit u in before.!!!
So now have speech audiogram 2 weeks before Southampton app
Good old NHS
Hope the grandchildren didn't stress you too much at weekend
Rich
PS have named my AN Victor after a certain MR Meldrew!!!
can rapid growth be malignant
acoustic neuroma 1.9cm
musician - hearing loss after surgery
Gamma Knife 
Cyst growing on what's left of the acoustic neuroma
