Hi , i was diagnosed just today with ... - Acoustic Neuroma ...

Acoustic Neuroma Support

1,895 members648 posts

Hi , i was diagnosed just today with an acoustic neuroma which is quite big..26cm.

55maria profile image

I have one sided deafness and am now waiting for a transfer to neuro. I feel scared and am asking for support. I am a woman age 57 who has a young and positive view on life and a family around me.

8 Replies

Hello Maria. I understand your fear of the unknown. It seems many more people are being diagnosed with a.n. these days. Mine was removed by surgery 26 years ago. Life goes on as before. Try not to worry about the outcome and best wishes. Keith

Hi you are at a good early age and should do very well. we were all feeling like you initially, I am sure but we are all here to help each other and are well. Good luck and take care

H there, Maria. Welcome to the club - another 50 something woman here! I know I felt panicky and scared when my acoustic neuroma was diagnosed a couple of years ago. I was referred to Sheffield for radiosurgery when it started growing again last Autumn, and had the treatment in May. Finding yourself classed as having a brain tumour is a big, big thing to get you head around (sorry about the pun!) but with time to adjust and take in all the information around, it should become less threatening. We are SO fortunate to live in a country where such awesome facilities are available to us. Best wishes. Nicky

Hi, First realise there are some good sides to this - (1) It's not cancer (2) There is a range of treatment available (3) you have some time to do your research and decided what's best for you. That said, the diagnosis came as a considerable shock to me some 17 years ago. To start your research you could read my story at anarchive.org/chris.htm and then look at anworld.com/ Take particular notice of their section on treatment options as any treatment provider will tell you his or hers if best - You can't expect a Ford dealer to tell you to buy a Merc! As you will see, my AN was about the size of yours when it was treated and many years later I'm still delighted with my choice. Happily you will not have to go to the USA for modern treatments today. There are also an number of very useful Facebook AN help groups you can join. Good luck

Hi Maria, welcome to the exclusive club that is AN Suffers! I wont say it's not tough but it has helped me to see what's important in life, and I have met some very wonderful and supportive people, so it's not all bad. I was diagnosed in May last year (48) at 3.5cm, I had surgery in August and have recovered well. I have Cyberknife on 23rd July so hopefully this will see it off, once and for all. As others have said, there is lots of choice for treatment. I'm near Birmingham so I have the advantage of the Queen Elizabeth Hospital with all the wonderful technology there. Remember you can choose where to have treatment these days, so it's important to do your research. BANA have been a godsend to me, some great connections to be had. Keep in touch and never be afraid to ask for support, this may be a rare condition but there is always someone happy to offer help to you Online. Last Saturday at the BANA AGM there were over 50 survivors all looking great and supporting each other, so someone will always help you out. Hang on in there, we all have.

Hi Maria,

This is not a big disaster, though we all feel like it is when it's first diagnosed. It's a profound shock and so scary at first. However, if you have to have a tumour in your head, this is probably the one to have! It is usually VERY slow-growing, and if you spend much time on the internet, you will soon realise that some are twice the diameter of yours when diagnosed (I presume you mean 26mm!) It is very treatable, but most aren't treated until they prove themselves to be growing, because of the possible effects of treatment. A substantial proportion show no growth on repeated scanning, and around 10% may actually get smaller over time. So, though you have been referred for a neurosurgical opinion, that doesn't necessarily mean they will want to do anything in the foreseeable future. A lot will depend on your other symptoms (if any) and the position and shape of the lump. I try to think of mine as a fatty lump very deep in my ear, rather than a brain tumour, and that is easier to cope with. It kinda is and isn't a brain tumour.....depends what you read. It's only really an overgrowth of the insulating layer on a nerve. But it is inside the closed box that is the skull, and it can press on the brain. But then, it might never grow!

Hi my husband was diagnosed with an acoustic neuroma he had some tinnitus which he thought was from working in a noisy enviroment, but he had nothing else he turned down micro because it takes about a year to recover and he is a scaffolder and optted for gamma because he was told he would be able to go back to work within a week he was not told it can take up to two years to recover he now has a damaged vestibular ballace centre and the so called consultants get away with it because in 2009 it was the norm for 50% of surgens not to offer you wait and see we beleave that

he had what is called a silent neuroma which they should never operate on my advice don't be affraid to get a second opinion these tumors can stop growing my husbands scan before his op showed no growth but they did not see fit to let us know now my husband will never work again.

I had a 1.8cm x1.2cm tumour when I was diagnosed which was growing, I had Gamma knife radiation at Sheffield about 18mths ago, I have had some symptoms such as a bit more loss of hearing in that ear and my tinnitus has got worse in that ear, also facial nerve problems, I have other health problems and my consultant for those recommended that I didn't have the operation because of the possible side effects to open surgery for someone with an autoimmune condition. The consultant I was with for the tumour didn't want to treat me with radiation because they'd had a bad experience of treating someone with my condition so I was inbetween a rock and a hard place! Eventually they said they'd treat me with Sterotactic Radiotherapy over 28 treatmenst which meant going nearly 100 miles for 10mins or less treatment 28 times which was ridiculous as far as I was concerned. So I opted for Sheffield, they couldn't have been more helpful and explained the possible side effects and what to expect. My 1st post treatment scan was satisfactory ( whatever that is supposed to mean) with some evidence of treatment to the middle of the tumour so assume that it is working!

I don't hestitate to recommend Sheffield for Gamma Knife they were great.

You may also like...