Acoustic Neuroma 4cm.

[Hzw1994]

Hi, I am 25 years old, and have just been diagnosed with a large Acoustic neuroma around 4cm in size. It is pressing on my brain stem and nerves leading to my brain. I am already profoundly deaf in my left ear and having lots of symptoms and side effects from it. I am currently awaiting to hear from the neuro specialist on the plan of action on treatment, whether its gamma ray treatment or surgery. How is everyone else coping with the unknown and the waiting game?

[redday64]

Hi Hzw

When it comes to waiting none of us have any choice .lol. I don't find it easy but being a lot older and retired at least I don't have to worry about work or looking after a young family. I am having my third MRI on Thursday 19th , my AN was 17 mm last time so I hope it wont be too long before I will find out if it has grown. My Tinnitus has gotten a lot worse but on my last visit the doctor said that more or worse symptoms does not necessary mean than it has grown . I think I am quite lucky as it is only the deafness and Tinnitus that is troubling me I had a couple of quick dizzy spells and was worried this was going to be ongoing but it hasn't happened again.

Stay positive, good luck with your treatment x

[Ballantyne56 in reply to redday64]

Hi,

Have you any tips on managing your Tinnitus sounds crazy but my Tinnitus is worse than having the tumour.

[levelslass in reply to Ballantyne56]

Yes stay off coffee and alcohol sadly.

[Ballantyne56 in reply to levelslass]

Hi,

Thanks !!! Hope you are doing ok

Regards

[levelslass in reply to Ballantyne56]

Yes balance issues if I forget to use eyes. Spectacular fallings over and clonking myself on paving stones. Ouch! Now also double vision apparently the optic nerve and acoustic nerve send signals at different speeds. Tinnitus but not bad. Memory and tiredness. Sometimes I just have to be horizontal but so grateful it wasn't cancer

[Lois_Howell in reply to levelslass]

Have to disagree with the alcohol, it's the only way I get a decent night's sleep

[Avarose2010]

Wait for the initial shock to were off and to come to terms with it . Get as much information as possible but don't scare yourself to death . Make a list of everything you want to ask and take it with you when you see the specialist. Try not to dwell on it ,keep busy,eat well and do some exercise. Be kind to yourself. We all know how you feel but you will get there . Kind regards

[Caribbeancruiser in reply to Avarose2010]

I’m the same. Worried sick until I see a neurosurgeon. Only have deafness ages the moment thank goodness but just want to find out more. Good luck

[MonicaL83]

The waiting game is difficult... Take some time to learn more about your condition, but try not to dwell. I know that is much easier said than done, but remember that worrying is not going to make anything better.

I was 25 (I'm 36 now) when I had almost the exact same size of acoustic neuroma. Mine was surgically removed, however, that was 10 years ago. Things have changed and of course, no two situations are the same. It would be great if they could do gamma and be done!

Please keep us updated, and if you want to reach out please feel free too. I am a volunteer with the American Brain Tumor association as a mentor, so I talk with people in the aftermath of things

Lots of prayer to you, and trust that the medical hands are making the best decision for you

[Kristyll]

Hi My suggestion is do your research , don’t know where you live but find the nearest most area of excellence for this treatment. There are not so many. Good xluck

[margielyn]

Sorry to hear you're going through this at such a young age. But, that can be the good news as you will bounce back quickly after whatever procedure is recommended. The most important thing is trust in your surgeon. Make sure your surgeon has treated AN many times in the past. We were able to get a top neurosurgeon who performed the surgery with an ENT surgeon and it was very successful. Whether it will be gamma or surgery, your faith in the doctor will mean everything.

[levelslass]

Just remembered paid £40 for NHS MRI scans to be put on dvd at local hospital. Then emailed Prof Brada scans and he looked at them to be sure AN was treatable with F S R. So please look up Clatterbridge Cancer Charity NHS Brada Michael and make contact. He is one of the top international experts on this type of benign tumour.

[levelslass]

Posted previous message but it didn't appear. So my AN was 3.8 cm. Had FSR fractionated stereotactic radiotherapy under Prof Brada when he was head of oncology at Royal Marsden. Wouldn't recommend gamma knife. Shorter doses very high, more damage to peripheral tissue and risk of regrowth. See PubMed NCBI for clinical data. Surgery you will lose remaining hearing as go through ear drum. Good luck!

[Ballantyne56]

Hi,

There is tumour nurses at the hospital they are great you could try phoning. It’s worth it and get some reassurance they may even speak to your consultant.

[bamboo9]

I can recommend you look at BANA, Britiish Acoustic Neuroma Association website, it is a charity and has a lot of information, and thoughts of people who have experienced AN.

bana-uk.com

[Hzw1994]

Got my appointment through for the specialist, end of January. It just seems like forever away. It keeps playing on my mind a lot my AN, I have been reading on here and most people are less than 3cm so it worries me having one bigger.

How are your families taking it? I have a wife and 6 kids ranging from 6 months to 13 years, we haven't told the kids yet as waiting till I have seen the specialist. Has anyone else got young kids and how have they accepted/understood it?

[Lois_Howell in reply to Hzw1994]

My AN was diagnosed 15 years ago when I was 54, it was 4cm so quite a biggie! having 6 young kids and being as young as you are is tough- that's why its important for you to stay positive.

By now you'll have seen the specialist so you'll know the course of action.

Remember:- It's not CANCER. Don't call it a brain tumour.

Find a consultant who will preserve your trigeminal nerve so that you don't have a facial palsy. ( Mine was Proff. Ramsden, the guy is a God amongst men). my eardrum was sacrificed but one side deafness is not difficult to live with. in fact having a genuine reason to have selective hearing is a plus.

Wait until you can tell your kids with a smile on your face, just tell them you have a 'growth' behind your eardrum that needs to be removed.

You are going to walk your daughters down the isle and make the embarrassing father of the bride (or groom) speech.

You'll look back at this time and smile xx