Experiences with

Acoustic neuroma

My daughter-in-law's mother was diagnosed with acoustic neuroma 3 years ago. They told her that her symptoms would probably go away in about a year. I do think she did a gamma knife treatment. Since the first onset to now, her tumor has grown.

My husband was diagnosed with an acoustic neuroma 8 years ago, he had surgery 6 years ago, life has been living hell since. I didn't dream it would affect us so much long term.

Hello, I’m new here 😀 in July 2024, I was diagnosed with a 3.5cm Acoustic Neuroma after having some CT scans at the hospital. I noticed my hearing was going in my right ear a couple of years ago, and thought nothing of it, until now.

Hi all, Has anyone had any experience of using the Soundbite device to address hearing loss in one ear after acoustic neuroma surgery? Just looking at options as I'm struggling a bit, so it would be good to hear of others experience.

How long does it take to return to driving after acoustic neuroma surgery? Any personal experiences?

I was diagnosed with a 5mm acoustic neuroma a year ago after having chronic migraine and several other neurological symptoms for a few years. A month ago, I had another MRI to check if the tumour has grown. It hasn't, it's the same size.

I have had tinnitus since 1966 but an event in 1988 led to a right-sided acoustic neuroma being present. The neurosurgery for removal took 12-hours at the Addenbrookes Hospital.

I have recently been wondering if I have one, but knew nothing about the Acoustic Neuroma group. Is someone out there psychic? Or is there a glitch in the Daily Digest programme? I thought that my Daily Digest was supposed to be information about recent thyroid posts.

Hi, I am a 49 year old musician and I was diagnosed with an Acoustic Neuroma in December 2023 and had to have surgery a few weeks later due to the size of the tumour and how ill I was. Since then I have been in recovery trying to get back all my functions (balance, stamina etc).

Hi, I writing this post on behalf if my husband who is 41 and was diagnosed with an acoustic neuroma in January. He has been referred to The Queen Elizabeth under Richard Irving and we had a lengthy discussion last week about options as the tumour is at a size where it needs treatment.

I wanted to share a recent change in my medication for Trigeminal Neuralgia caused by the Acoustic Neuroma. I was on Carbamazepine for around 9 months or more but developed more a more problems with memory.

I wanted to share a recent change in my medication for Trigeminal Neuralgia caused by Acoustic Neuroma. This is treated with Carbamazepine also being used in epilepsy. I was on Carbamazepine for around 9 months or more but developed more a more problems with memory.

After my initial referral to ENT for tinnitus and severe single sided hearing loss in April I finally got an appointment at the beginning of December. The doctor then sent me for an MRI at the end of December (7 weeks ago) and since then I have been waiting for the report. I phoned the hospital 2 weeks

I have just been told this morning that my MRI confirmed an acoustic neuroma. The ENT Doctor said he is now referring me to a specialist in Manchester. Can anyone tell me what to expect now ? Did anyone have any treatment for it ? Thank you.

Hi All, I’m just looking for any of your experience in changing roles at work to accommodate your AN. I’m on watch and wait with my first year scan results due on Xmas Eve. My symptoms are fairly stable but they have increased slightly over the last 12months. Bit more tingly and pain on the AN

Hi, i had gamma knife sept 23 and I've just had a scan sept 24. I do have a telephone appointment with my consultant early november and i have to admit i'm quite anxious regarding any results. I was told when i had the gamma knife that they dont expect it to stabilise and shrink for at least a year,

I have been diagnosed with a large acoustic neuroma (4.6 cm), and unfortunately, surgery is the only option for a tumor of this size. Although I don’t experience balance issues, vertigo, or tinnitus, I struggle with brain fog and feel extremely depressed.

having developed Trigeminal Neuralgia in 2023 from the impact of my Acoustic Neuroma, I started Carbamazepine in Dec 2023. Although this has reduced headaches considerably I’m now left (6months on) with severe motivation issues. I just struggle to do anything other than respond.

My upcoming AN surgery will result in permanent hearing loss in my left ear. What is the experience of living with hearing in only one ear, and has anyone had cochlear implants? How effective are they?

I rang the GP and spoke to yet another one who revealed the GP's think I might have an acoustic neuroma. She got me an urgent brain CT scan (not MRI) with and without contrast to check for lesions, stroke etc on account of the blackouts. It wasn't specifically looking for an acoustic neuroma.