RECENT DIAGNOSIS AN

[flappers]

Just trying to get my head around the possibility that the screaming continuous tinnitus in my right ear is caused by 'Boris' ( I've named the tumor) and that the 'treatment' recommended is watch and wait, rescan in 6 months. It's 15mm at first scan. Anyone had useful treatment for the symptoms of tinnitus caused by AN? Anyone had surgery or radiotherapy for one of similar size. How big until surgery becomes safer than doing nothing? Hope you are all managing to stay sane in this crazy world, both in our heads and out!!

[Avarose2010]

Hi , how is your hearing? because if it has been affected you might find hearing aids a big help with the tinnitus, I did as they help to block out the sound of the tinnitus and replace it with hearing. The only time it bothers me now is when I take them out at bedtime. I find the best thing to do is try not to listen to it ,learn how to block it out and concentrate on something else, it takes practice but it does work. Hope this helps you . Kind regards

[Kristyll]

Hard to believe BUT eventually you find it’s a little less intrusive and you can live in a kind of harmony...or mutual respect. The more you get stressed the worse it gets. Good look, take good care,

[flappers in reply to Kristyll]

Thanks Kristyll. I know this to be the case. Gosh, it's so very very loud though!! I am a really positive person and find ways of dealing with adversity so I know I'll find a way to manage this. It seems everyone on this forum are pretty amazing people, with such helpful outlook on life. It's what will see us though!

[Kristyll in reply to flappers]

It does take quite a while as your brain has to adjust to it. Try playing. Using if it’s worse at night it’s awful x

[Tabbycat]

Hello flappers

Loving your photo montage!

It took me a long time to come to terms with having tinnitus. I had quite sudden hearing loss and then after a couple of months my tinnitus started. Despite following all sorts of advice, there is no magic cure, even if you have the tumour removed your tinnitus is most likely to stay with you.

Like Avarose I found that wearing a hearing aid helps lessen it - but you have to persevere. I became a regular at my local hospital audiology clinic and had it adjusted several times. The first audiologist was very interested in AN and tried as much as she could to help.

The only time it really bothers me now is when I take my hearing aid out at bedtime and am trying to get to sleep. There are several sounds that you can play to relieve tinnitus - some people swear by white noise, but I found it irritating. I have downloaded several options that I play - sounds of waves crashing on the shore and rainfall are my favourites at the moment. There are several suitable ones on BBC Sounds, if you prefer music, called Mindful Mixes. Also my 'waves' one is from the CBBies section made to help babies get to sleep. Again you have to persevere until you find the one that works for you.

Hope this helps,

Tabby

[flappers in reply to Tabbycat]

Thank you so much for taking the time to reply. I shall check out the sounds and hope that my Audiology apts next month help. I am working on accepting it as part of my landscape now but also hoping my brain will adjust and play a different tune as some point! All the very best to you.

[Margyr in reply to Tabbycat]

Hi tabbycat pink noise white noise I find font work for me a new audiologist suggested a hearing aid last week she said he helps with noise 50 % of my hearing is gone and AN is only 4mm

[sadie2009]

I was told by Sheffield royal hallasham that 3cm is the cut off for str being effective. I had it at 2.8 cm and have had shrinkage and stability for almost 3 yrs

[flappers in reply to sadie2009]

Thanks Sadie.

[Ballantyne56]

Yes I a. Going crazy with Tinnitus and lack of sleep

[flappers in reply to Ballantyne56]

I am so sorry you have this too. I hope you can find some relief. Have you had tinnitus therapy?

[lupie-Cathy]

Hi I had stereotactic radio surgery for a 1.8x 1.2 AN at Sheffield in 2013 still have tinnitus and have lost a small amount of hearing post treatment but no other problems I have biannual mri’s all well as far as I know! I had tinnitus in both ears long before my AN was found though it’s now much worse in the left ear but most of the time I don’t hear it hearing aids definitely help or if your hearing is ok then you can get white noise maskers which can help but learning to block it out as much as possible does help a lot

Good luck on your AN journey

[flappers in reply to lupie-Cathy]

Thanks so much Cathy. May things remain positive for you!

[Tessandrosie]

Hi

Love the fact that you named your tumour my tumour (unnamed was 1.5cm January and by June had grown to 2.5cm (fast growing)..had it removed as much as they could in June this year. Radiotherapy was ruled out because it was attached to the facial nerve and balance nerves, I struggled walking and obliterating it would have made my walking worse/impossible (?)for a long time. I think 2cm plus is considered medium and surgery worthy. I lost my hearing more and more as it grew, and sometimes what hearing you have left is salvageable if the tumour isn’t too big, however, they ended up cutting the hearing nerve to get to the tumour anyway. I think it largely depends on your symptoms, if it’s kind of small, and the impact it has on your life.

(Sending hugs of care)

Post script/ after the surgery I got used to the tinnitus..I’m now totally deaf in that ear and it’s actually nice to hear something, even if it is tinnitus and nothing else. Crazy huh!

[flappers]

Thank you so much for taking the time to reply. And for the virtual hug. We all need those hugs more than ever at the moment. 🤗 What a speedy journey you've been on, from January to surgery in June. Must have been shocking but also positive there was no delay to surgery. What part of the country are you in/ had your treatment? How is your balance now? I guess when you've had some of those awful affects, tinnitus and deafness seems the better side of it all. I do hope all continues to improve

[Tessandrosie]

Thanks..I’m in Australia..there was a slight delay to surgery as they stopped elective surgery due to COVID. I snuck in when it restrictions in Melbourne had eased a little. My hearing had been bad for about a year before I had small aneurism this jan and was left laying on the bathroom floor unable to get up and being sick.

Then the scan revealed the tumour. My balance four months post surgery is still not great..my peripheral vision isn’t great and I’m wobbly..lol. I have blurred vision due to facial palsy that they say will take approximately 6 months to start to be normal again (no blinking in that eye!)But I feel so much stronger inside..i felt so weak and tired pre surgery. At first I thought the tinnitus would drive me mad, but as others have suggested your brain accommodates eventually. And now the total deafness in that ear is what I concentrate on. I find it hard to recognise where sounds are coming from. To be honest, the surgery was so major for me, personally and mentally as well, I was just glad to come out the other end with a benign tumour partially removed, and alive, and able to function again, that all the other stuff blew away into insignificance. I survived brain surgery and im alive and it’s benign. Gotta see all positives in that and smile 😊

[flappers in reply to Tessandrosie]

You have had to deal with so much. And still put it into a positive spin... That is the way to get through such tricky times. I am slightly ashamed at myself for even feeling frustrated at just having the relentless noise, as at this point, I'm otherwise symtom free, but with the same size tumor you had in January. I'm so glad you could have the surgery but what a long journey it is to recover from such an invasive operation. Hoping that you can enjoy coming into the Australian summer and each day see small improvements. I am grateful for you, fit sharing your very difficult experiences and look forward to hearing how you progress. And always keep smiling! Take care, wobbly smiler! X

[touring in reply to Tessandrosie]

I can really relate to your feelings - I had surgery less than a month ago and wanted to bounce back straight away. After all the black pictures that are painted about what can happen, I almost couldn't believe I was still in one piece! Certainly there are issues and reading your post I know I need to have patience - something I'm not naturally blessed with! You radiate so much positivity, I feel fortunate to have read your post. Enjoy the summer months - hope restrictions are easing for you now.

[touring]

Try not to overthink the situation, but I would suggest you ask for a referral to a consultant radiotherapist. Depending on the location of 'Boris' you might be ok for that treatment as I don't think the tumour is too big yet (but I'm not a professional!). I got a referral a couple of years ago and was told that location and size ruled me out at that stage and that surgery was the only option. I stayed on watch and wait and after my last scan was told I needed the surgery - which happened earlier this month to debulk my 'Boris'. I am now waiting for a visit to the Radiotherapy Consultant to see if any remaining bits can be mopped up. Stay positive!

[flappers in reply to touring]

Thanks...yup, Definitely was a bit overthinking, but this forum has helped me out it all into perspective ( and the fact that I'm usually very level headed and sensible about life's little challenges) . I did ask the consultant at what point does it go from too small to operate to too big for radiotherapy... Realise I didn't quite get a full answer. He said that it is currently the safest option to leave alone, but if it grows much more and has a negative impact on my life, then it'll tip towards safest to remove. No talk for radiotherapy as yet. I think I'll just focus on dealing with the symptoms and accept that i can't know how it'll pan out, just like with most things! How are you coping after the surgery?

[touring in reply to flappers]

Remarkably well! I have to learn to be patient though and not expect everything to go back to normal overnight. Reading other posts on the Forum really helps as it makes me realise it can take months. Taste is still weird, but sense of smell coming back. I have to wait for things to settle down with my left ear - looks as though I will have lost all hearing, but not seeing anyone in Audiology until I have had a review appointment with the Neurology Consultant - probably next month. Balance issues are being dealt with by an excellent physiotherapist . Early days! - won't be running a marathon any time soon: not that I ever did!! Feel so grateful for supportive family, friends and neighbours. Stay safe.

[flappers]

So glad you have an excellent physio and supportive friends. Sometimes it's hard to be the one who may need a bit of support, especially if you're the supporter in most other situations! Sounds like you're making brilliant progress. One day at a time....

[Teashop]

Hello there my tumour was3 cm removed on 15 Oct 2020 was 20 hrs op.but am doing well.before ppl had very bad tinnitus had tinnus program put on hearing aids it did help.also try meditation.best of luck.😁

[Ballantyne56]

Hi my tumour is only 10mm my tinnitus is awful I have never found anything that helps especially at night.

Sorry

[flappers in reply to Ballantyne56]

I'm sorry that you have that to contend with too. It's pants. I'm hoping hypnotherapy and tinnitus therapy will help. I'm trying to feel grateful it's not in both ears!

[Margyr]

This crazy world is getting more crazy the noise would drive you mad

[earhole]

Hi tinnitus is a real pain in the bum, I had my inner ear removed, 9 months ago and I still have tinnitus all the time, I find listening to music all the time helps to keep my mind off the hisses and fireworks that are in my head.hope this helps

[6625]

I had surgery to debulk my tumour 6 years ago it was 28mm and after surgery it shrunk to 10mm,unfortunately after a scan in September 2021 it had began to grow again, I was given radiotherapy in December I'm now praying that it has stopped the growth otherwise its back for surgery