ACOUSTIC NEUROMA

[Arnaud]

Hi, I have an AN and the MRI I had a few days ago revealed the size of the tumor at 2cm x 1.3cm. I have been having hearing loss and tinitis for nearly 3 years now. Can anyone tell me the options I have?

[anan88]

Hello Arnaud. A lot depends on your consultant's opinion. The position, size, shape etc. of the tumour, which nerves it's affecting, and your consultant's experience and opinion, will determine whether you need surgery or radiosurgery, or whether you may be recommended to "watch and wait". In my experience (2 surgeries plus Gamma Knife, now 6 years on from diagnosis and surgeries), an important factor is researching the experience of the available care and consultants in your area. And if you don't already meditate, it REALLY helps to develop a daily practice, even if only 10 minutes a day. You feel so much more in control of everything, including your own emotions if you're an emotional type! I use "Headspace". Other than that, once you have a course of action, place your trust in the professionals, keep an eye on current research, and develop a wicked sense of humour.

[lupie-Cathy in reply to anan88]

I had a 18mm x 12mm AN which I saw the neurosurgeon for and he wanted to operate, I knew there were other options available so did some research and decided after a lot of kerfuffle to- ing and fro-ing with various specialists ( I have lupus and it complicated their choices apparently) I was told I could have 28 treatments of fractionated stereotactic Radio surgery, I refuted this as I live a good couple of hours away from the hospital I'm under and asked to be referred for Gamma Knife at Hallamshire hospital in Sheffield as they're a centre of excellence, I had GK 3.5 years ago now I still get some symptoms but not as many as I did had 2 scans with no growth since. I lost a little more hearing in the bad ear but it's not gone completely and a strong hearing aid helps a bit. Hope my journey gives you some ideas for your treatment good luck

[Arnaud]

Thank you very much for your help Anan

[bypass]

Sorry to hear about your AN - But go the the AN World web-site for patient focused information. For options try this section anworld.com/pretreat/

Good luck

[Arnaud in reply to bypass]

thank you very much for your help

[Kristyll]

Your Dr will explain all options as not sure if they vary area wise. Usually size and symptoms can dictate to reatment options. It's usually stereotactic radio therapy or surgery

[Arnaud in reply to Kristyll]

thank you very much for your help

[bypass in reply to Kristyll]

Sadly, in the UK at least your Doctor WILL NOT usually (a small number will) explain all the options as they tend to be too busy to be aware of them all. If possible you will need to get an appointment with at least one surgical specialist and one of more radio-surgeons.

[lushious]

Hi, they found mine approximately 2years ago now, mine is 1.3 cm, and I believe had been growing for many years. They are typically very slow growing and I've had three MRI scans and it appears to have stopped growing which again is typical, I have tried a hearing aid, but found it didn't help and to be honest with you the tinnitus and deafness you learn to live with. If it was me I would just leave well alone, they will give you yearly MRI scans to see if it's grown. When they first found it I was devastated and reading things online really doesn't help. I am ok with it now and i rarely think about it. Hope my story helps.

[Arnaud]

Thanks a lot Lushious. I also think that I shall observe the growth. And you are right, deafness and tinnitus is not so bad.