Overwhelmed

[Peta2407]

I've just been diagnosed with a 20mm acoustic neroma feeling very overwhelmed with the whole thing at the moment have seen ent & nurosurgeon and waiting to see radiation dr .im interested in hearing anyone's experiences and how you cope withe the continual tinnitus which drives me insane can't sleep really am a bit of a mess I think I'm just in shock

[Njd59]

Hi there. For many of us, the first weeks after diagnosis are a real shock, and it can take a while to be peaceful with having an acoustic neuroma. I was ok as long as I called it "a lump in my ear", but considering it as a tumour made me very fearful and anxious. 3 years along the line, I have some quiet music on a tablet if my tinnitus is keeping me awake (I use an app called Sleep Sound). A bit of advice I was given that sounded wacky, but worked, was to listen to the tinnitus when it caught my attention, and describe the sound, as it was continually changing, and to enjoy it rather than get annoyed! You may also have to be careful after twilight if your balance is a bit iffy, so have a torch handy. My neuroma grew to 1.5cm and I had stereotactic radiosurgery last year which seems to have stopped it growing. It helped me cope emotionally, to keep being thankful for the tests and procedures that can be done now, as opposed to 50 years ago. All the best for the months ahead as you work through the issues.

[Kristyll]

HI It is a shock, I have been there. Deprnding on what area you are in there are meetings of BANA British Acoustic Neuroma Association around the country and office staff and branch leaders you can contact for help and reassursnce. Also check you will be given all treatment options and look who is best in your area. Good luck

[bypass]

Yes, that sounds typical I'm afraid! But don't panic and educate yourself so you can ask the right questions when you see the Docs. You might read my story; it's a bit old now but the principles remain - See anarchive.org/chris.htm Then you can start to educate yourself at anworld.com/

Good luck, it will work out for you in the end.

[sclb]

Hi! Yes, it's a huge shock discovering you have one of these. I felt as if the bottom had dropped out of my world, and I didn't eat or sleep for a week, which didn't help me to think rationally about it.....oh, and the tinnitus gets so much worse if I'm stressed.... (I think we're programmed to be much more aware of sensory input when we feel threatened, so we really focus on the phantom sound conjured up in the midbrain due to the hearing loss....I think of it a bit like phantom limb pain in people who have had an amputation) I find listening to the radio through earphones helps a lot when it's

bad.

So keep it in perspective. Yours is about the same size as mine, i.e. a small one. If there's no big reason to treat it, why not wait and see if it is actually growing? Consultants seem to recommend a repeat scan at either 6 or 12 months after the first one. If it's not growing, why treat it? If they grow, they usually grow very slowly, and the occasional one gets smaller over time. There shouldn't be any rush, unless of course there is something unusual about your AN. So if the consultants are recommending treatment, I would be wanting to know what would be lost by waiting. You may not need to make a decision for a long time, if at all. And most people find it easier to make a big decision when they're not in an emotional tailspin.

The tinnitus should be a lot better when you start to come to terms with this, and realise it's not the end of everything. But that seems to take a few weeks....meantime your GP may be able to prescribe medication to help with the tinnitus. Medication is not specifically licensed for this indication, but betahistine, low dose amitriptyline or fluoxetine can help, if your GP is willing to prescribe off-licence.

[lushious]

As far as the tinnitus goes you will get used to it, I've just been fitted with a hearing aid as mine has made me slightly deaf in one ear, the aid helps with the noise if the tinnitus and you can try white noise as night to help you get to sleep, my neroma is 13mm, so at the moment they are doing yearly scans to see how big it is growing, you do learn to just live with it as it's going nowhere.

[bypass]

Hi, it is horrifying to be told "you have a brain tumour" and I can still recall that moment, even though it was over 18 years ago for me. You can read my story here if you wish anarchive.org/chris.htm

The main thing you need to do is educate yourself and in m y opinion, the best place for a patient to start is anworld.com/ Read it all, but not in one go.

Good luck and come straight back if you have more questions

[Peta2407]

Thanks everyone for your replies it really does help to hear about everyone's experience I'm about to start my journey with the CyberKnife l feel a huge relief that l wont be having surgery so fingers crossed that this all works out l will write about my experience as it happens

[Humour-tumour in reply to Peta2407]

Hi, hope you are feeling better by now after CyberKnife surgery. Could you please update your post OP as I would like to know. I'm just starting my journey as AN patient from 2weeks ago's prognosis.  Hope you are doing well. Xx

[Peta2407 in reply to Humour-tumour]

Hi Had my Cyberknife treatment no pain was very anxious but shouldn't have been as it was not at all scary. Was very tired for about a month after and steroids made me feel ill but only had to take them for a few weeks.Balance and tinnitus seemed to get better but has come back have spoken to my specialist and off to see him Monday he said the Tumour is swelling which is normal after Cyberknife l have been very teary this week but l think we all have good and bad days l get frustrated as l like to keep busy and at the moment have no energy . Good luck with your AN journey  let me know how you get on 😊😊

[Humour-tumour in reply to Peta2407]

Many thanks for your time to write me about your journey. Hope we can have good cry ! Hope ur swelling goes down and leaves you in peaceful state. Will be thinking of you. Send me any time if you like and share your thoughts. Young xx

[Peta2407]

Thankyou will keep in touch it's always nice to share thoughts and feeling with someone going through the same process take care 😊

[Cossie]

Hi , PETA , how are you now ? And may I ask how everything went ? I am only a few weeks diagnosed and the tinnitus is awful . I have another MRI scan in July to see if it has grown . I also have gone deaf in my right ear and am finding I sometimes get dizzy spells . 

I do hope things are better for you , take care Pam xx

[Peta2407]

Hi Pam, l had my cyberknife treatment in November felt like I'd been hit by a bus for a couple of weeks and then felt quite well over the last few weeks have been suffering with really bad balance issues so went and saw my specialist who said its normal as the tumour swells about 3months after radiation so had another MRI last week and will see what the results are on Monday I'm glad l had the cyberknife treatment as really didn't want the op . The tinnitus drives me insane and also have gone deaf in my left ear the dizziness comes and goes makes me feel drunk ha ha . I find listening to relaxing music with earphones helps when the tinnitus and dizziness are bad you have to stay positive although it is hard sometimes take care am always available for a chat PETA x