recently diagnosed with 3.5cm acoustic neuroma

[Longtallsally22]

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. The ringing, buzzing and sounds of crickets is getting slightly worse and rather annoying now so I try to sleep at night with a fan on. I have been told it’s a non cancerous tumour and that I’ve now been referred to a neurosurgeon, and that’s it. I’m quite anxious and worried I may need surgery? But haven’t been told if I will or won’t yet. I don’t know if 3.5cm is small, medium or large? Any help or advice is welcome and I look forward to being part of the community 🙏

[Philsparks]

Hi, I was diagnosed with a 3cm acoustic neuroma 12 years ago. I went for the option of gamma knife surgery, which is a massive dose of radiotherapy. I was told 3cm was the maximum size they would use the gamma knife on but I would ask about it and see if the option is available to you. I can say it has been very successful for me. My tumour has now shrunk to 1.7 cm and I’m very happy that I didn’t have to go through evasive surgery. Although successful unfortunately the deafness and tinnitus will always be a pert of life. Good luck with whatever happens.

[Pinkrose1]

Hi Longtallsally22, I can totally understand your anxiety, it is a shock to hear you have a tumour, i cried for days. I was told i needed surgery for mine as it was pressing on the brain stem. It was 2.9 cm when diagnosed and was referred to as large. Its likely they will offer you surgery due to the size but remember you will be in safe hands with the surgeons, they are fantastic. I can't thank them enough for removing mine as my symptoms were making me so ill. Try not to overthink things, I hope you don't have to wait long for your consultation so you can get more answers.

[Cwk123 in reply to Pinkrose1]

Hi, this is my scan, the 2 scans were dated 10 months apart and as you can see the tumour had doubled in size, the left scan was my last scan. consultant was surprised of the rapid growth. I was then given the option of gamma knife, seen quite quickly, which i had last year september. As you can see the tumour i think is sitting very close to the brain stem which is quite worrying. So far i suffer with hearing loss and tinitus. Slight eye twitching after the gamma knive, slight dizziness off and on. Im 49 years old, diagnosed 3 years ago. I have my next mri in september and a telephone consult in november. Hoping it has shrunk, but i was told it takes up to a year to stabilise and shrink. One question i do have, once the tumour starts to shrink, is there a chance it could start re grow ?

Black and white

[Anon30]

Hey, I had the surgery 18 months ago and am on the road to recovery. I won’t lie and say it’s been easy but it definitely feels better than it did before. Mine was also pushing on my brain stem and causing really bad issues with my balance and dizziness. If you ever want to ask about what to expect from surgery feel free to message me. It can be really unsettling but the best people are going to be on the case for you. I also got assigned a nurse who was fantastic in answering any questions or concerns for me both before and after. Hopefully you won’t need surgery but if you do, you will have lots of support.