Acoustic neuroma

Hi, I was diagnosed January 23, I'm waiting for my next mri which will be in June to see if there's any growth. I'm currently on watch and wait. I have really bad tinnitus, sometimes I can't hear conversations due to hearing loss and really loud tinnitus. I feel at the moment that things are never going improve. I'm so fed up of this. Does anyone have any suggestions to calm down tinnitus.

[Karbob]

Hi, sorry to hear about your tinnitus problems. I and most people with AN have tinnitus problems, mine are horrible at times and awkward to ignore. I find wearing my hearing aid helps even though not always to hear people,just to get rid of noise. Other than that I am learning to tune out of some of the noise although it is very difficult at night. Never tried music at night though. Someone might have some more ideas. Believe Specialist Nurse may be able to help also. Try emailing them.

[MitzyAnn]

Interestingly, I feel that I have been very neglected by the Queen's Square Skull Base Team because I was diagnosed with an AN from an MRI done in December 2021 and they have yet to do another one to establish whether it is growing or not. I now realise that that is actually negligent. No matter the size most top specialists say you should have a follow up MRI within six months of the discovery of an Acoustic Neuroma to establish whether it is growing and, if so, at what rate. I have my MRI this Monday - which is 16 months from first discovery. I am sharing this here because it sounds like they are very much on top of yours...doing what needs to be done. Tinnitus is something that our brains eventually adjust to. Have you been given a white noise generator from the hospital? You can get ones that have an ocean or waterfall setting. I have used one for years in order to sleep. They do work. Silence is never the same again but our brains do get used to the situation.

[JDN57 in reply to MitzyAnn]

In September 2021 I woke up with hardly any hearing in my right here. After 2 weeks thinking it was wax or something I eventually went for a hearing test who referred me to my GP. He referred me for anMRI but it wasn't classed as urgent so was told could be 4-6 months. Paid privately instead and was diagnosed with an 11mm AN. Referred to ENT/Gammaknife specialist and I had a telephone consultation in January 2022 and told watch and wait and would have another MRI in October. Had the scan and as of today I am still waiting the results!! I emailed the consultants secretary in April after 6 months and received a reply telling me they were very busy and I just had to be patient. So you are not the only one out there feeling neglected. I know lots will say don't worry they are slow growing, but then on this forum you read whereby ANs have doubled in size from one scan to the next. I have hearing aids now as I lost 80% of my hearing and now have screaming tinnitus which I am trying to get to grips with. My ideal time was sitting in silence doing needlework and I know that will be happen again. Sorry to sound so negative but wanted you to know not everyone gets immediate answers.

[zeekay]

Hi Hidden, sorry to hear about your diagnosis. With regards to the tinnitus, maybe look into hearing aids with the team looking after you. I tend to use my ear pods with or without sound in my hearing ear and i find it calms my tinitus down. I also try to have music or something to focus on when it is quiet around the house.

Also, check organisations like the Brains Trust and British Acoustic Neuroma Association if you have not done so already. In addition to their information and guidance, members in the various support groups will offer tips on how they are managing their symptoms. Though we all experience our symptoms differently, we find ways to manage them and cope the best we could and it does get better as we learn how to live with our "new normal".

I am 10 years post diagnosis and 8 months post treatment and managing new symptoms like tinnitus and deafness.

But most of all, please look after your wellbeing the best you could.

All the best.

Zee

[flappers]

Hi, I am so sorry you are struggling with the tinnitus and hearing loss, and have the difficult task of coming to terms with your diagnosis. I am a little further down the line from you, having been diagnosed with a 12mm AN in Sept 2020, and had radiotherapy in June 2022, due to it doubling in size. I would like to reassure you of several things. Firstly, the stress of the diagnosis and getting used to the tinnitus (unthinkable now I know to imagine it'll become tolerable) is awful in those early stages, but I can honestly say, it is amazing how you'll adapt and get used to it, so it becomes your new silence. Hearing aid in that ear definitely helps, mine has a tinnitus masker, and I notice the difference. Some thing like 40percent of these discovered never grow or need treatment, and watch and wait although HUGELY difficult, if often the very best thing to do. If you do need treatment eventually, it is SO much better than feared. and there is lots of support out there. As for the tinnitus, somehow I no longer really notice it much of the time (it is constant in that one side) and it no longer distresses me at all.

I went from so weary and worried, not able to walk in a straight line, not sleeping etc, not being able to hear or cope in groups at all, to really hardly noticing my symptoms at all now, they are still there, but I have adapted.

But mostly, with the help of brainstrust (free weekly hypnotherapy sessions, for those with AN's, and support groups) I have really learned to relax and adapted to the little gifts these things give us! Brainstrust also have peer supporters, so you can chat with someone who has the same as you, and may be able to relate to your worries. The best advice I can give you is to reach out to those who can support you, know that it really won't kill you and you can still live your best life (I have just returned from a crazy three day dance weekender, having also travelled to Thailand for a month in Feb) ....

There are trials for certain apps at the moment in New Zealand, which have shown great promise in helping tinnitus sufferers, I am in touch with the professor leading it as asked him if he will include people with AN's and they are looking into that. You are not alone, tinnitus affects so many people, and we all have different ways of managing it, I would say focus on really nurturing yourself, and know it will not always feel this awful. Lin x

[MazMarigold]

Hi, I had my brain tumour removed in January this year, and expected to be "normal" afterwards.....not so !! Seems like the tumour was the easy part of it all...although it was large 4cm, so it had to go !! But I was found to have hydrocephalus, which has caused me some problems which im still negotiating !! The tinnitus is LOUD...in both ears, but ive found that wearing earplugs listening to stories and books helps....a lot !! My daughters got me audible for Christmas, and its brilliant, it may not suit everybody, but it works for me, thank goodness. BTW....im not in anyway paid by audible or amazon to say this !!! You can also listen to radio and youtube, which i also use...Im an Archers fan, ive been listening to them for over 50 years....hope this helps xxx MarieAnn

[Skipton]

Hi It’s a good idea to join, BANA. British Acustic Neuroma Association. Lots of support and help there. Good luck