I Have An Accoustic Neuroma

I have been diagnosed with a 5mm accoustic neuroma and can't wait to have it removed in January.  I am fed up with all the symptoms that go with the neuroma.  I've read some terrible stories about people who have had the operation done, but I have actually met people who have had their's removed and they've never looked back.
bouverie bouverie
12 Responses Dec 5, 2010

Hi, you sound very similar to me, I have a 9mm tumour, I found out two years ago, after i went to specialist, as i was getting deafer. After an MRI it picked it picked up an 7mm tumour. I have yearly MRI's over in NZ they don't do anything until they are about 20mm. The most frustrating part, is i am getting worse at hearing as it is also in my good ear, my left ear has always been partially deaf, now i have to cope with listening really hard in that ear, as my right ear sounds of people talking has got very muffled, it just sounds like everyone is really mumbling. There are a lot of words I have to guess, I probably only hear a quarter of what is said. It's very frustrating, and i feel alienated at times. I ofton see the looks on peoples faces, when they have to repeat 2-3 times something to me. Soon i will get a hearing aid for my left ear, hopefully it will make a difference, but they are so expensive. I feel even the specialist doesn't care, I am not under neuro I am under an ENT specialist. I have had rock the boat vertigo for nearly 2 years now, think it's my life, so have learnt to adapt, if i have to lean over i hold on, and if i am over for a longer time, come up slowly. If I look in the distance the ground is moving, I would give anything to feel normal again. Most people don't understand, even family, they just say get a hearing aid. But then I have never gone on about it being a brain tumour, more that it's a tumour on my hearing nerve, they just think it's on my ear. I can live with the tumour if it never grows, but I am hating the hearing loss, this is one of the reasons, my specialist gave for not operating, to preserve my hearing. I keep getting told not growing, and am only in specialist for 5 mins, then wait another year. He even hummed and harred weather to do another MRI next year, but then said okay we will. I felt like saying don't bother, when my symptons get bad, I will just go to the emergency department of the hospital. It is so nice to talk to others who understand the frustration.

I also have a 5 mm AN, what were your symptoms? How were they affecting you? What type of treatment did you have? and Are you glad you did?

I was told this week that I have a Accoustic Neuroma on my right ear, typical of my luck it is my good ear, as I am virtually deaf in the left. As you say there are some terrible stories on the sites which are making me terrified of having an operation. I am 57 and a full time carer for a disabled husband. I have yet to see the specialist who will advise me on what is to be done but I am tempted to take my chances and wait and see if it changes. The thought of being totally deaf, with facial palsy makes for a dim future. Thanks for your post.

I was diagnosed Two years ago, with a 7mm, last year it was 9mm, although it was the first time I met the specialist for my tumor, he said it showed I had no growth. I am due to be seen again next week, for the past 18 months have constant rock the boat vertigo, which is a feeling of the land rocking, especially if I lean over, I have had 2-3 big vertigo episodes where everything totally spins, and I have to hold on tight for fear of falling over. My hearing is constantly getting worse, I still hear sounds louder in the affected side, but words are more muffled now, I am partially deaf in my other ear, so quite hard coming to terms with the tumor in my good hearing ear. I hate walking and looking to far in the distance, as everything rocks, horrible feeling, when I was first diagnosed it didn't bother me, but slowly, feeling more depressed about it, and I love to talk to others with same or similar things, as most people don't understand what you are going through.

Hi Jenny. I started with the same vertigo symptoms in March 2013, which lasted about 8 weeks, and for now I am ok balance wise. During this time the hearing went in my good ear. For now nothing is getting worse. Have you enquired about an on the bone hearing aid, I have been given one, which is like a metal band that goes round the head with a small box that fits tight to the back of the ear, this is attached to a box which you can clip to your clothes. This contraption has given me my hearing back. Regards Pam

might try and find out about this, sounds better, although I havent even tried a normal hearing aid yet. I forgot I had written above comment in May, so repeated most today, put it down to a bad year, with many stresses, not related to AN.

Also, the tumor did not get larger and stayed the same so I think that might be considered a successful story. I opted for the sterostatic fractionated radiation only. You might want to look into that.

I had sterostatic fractionated radiation and remember your symptoms will most likely not go away. I still have hearing loss and still have balance issues and still have pulsatile tinnitus.
Yuck But it does however remain basically the same as before the radiation.

I am a success story. I had an acoustic neuroma removed in 2002 at age 39. I think it was about 8 mm (I remember the doctor saying it was the size of a pencil eraser removed from the end of a pencil). I was walking around the hospital the night of the surgery. By the next morning, the nurses removed the IV and catheter so that I could walk around on my own. My hearing, tinnitus and balance did not get worse. I had no trouble with my facial nerve. I was driving 4 days after surgery. If you have an acoustic neuroma and are looking on the web for what to expect, remember that people that have had uneventful experiences like mine don't usually post (I did because I met a woman with one and she was worried after reading others' accounts).

I had a 2.5 cm tumor removed in 7/11. I had no (recognized) symtoms, other than losing my hearing in my right ear. Since I thought it would be easier to recover now, rather than later when it became a necessity, I opted to have surgery to remove it. <br />
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I'm still recovering some of the facial paralysis on the right side. I, too, have no hearing in the right side, but am considering the surgery to redirect part of my left side hearing to the right side this year.<br />
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The side effect i am most frustrated with is the strangely sweet, spicy taste in my mouth 24/7. ( I am curious if others have this, too) I do still have dizziness and the "stagger" that is common after surgery, some difficulty with right eye swelling and inflammation.<br />
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I was able to return to work 2 months after surgery, glad to return to normal activities.

removed tumor june of 2010..had most of the complications..csf leak,lumbar drain for a week,spinal blood patch..facial nerve still recovering.all facial nerve is almost all back..total hearing loss right ear..glad to be alive but it still sucks..

I had a 5mm acoustic neuroma removed on Dec. 1, 2010 at Stanford. I'm doing fine. My balance is weak in the dark, and I have difficulty locating the source of sound sometimes but otherwise, I am happy to be alive and rid of (most) of the tumor.

I had mine removed in January of 11....recovery has been frustrating. I cannot feel the right side of my face and cannot see or speak very well. My surgeon says it will come back but it's been three months with no improvement...it's very frustrating! I am thankful I am alive but the trade off isn't easy.

I had mine removed 3 years ago and although I lost my hearing on the left side which was the tumor side, I am very glad I had this done. Surgery and recovery was much easier than I anticipated. Within a month I was back to normal and doing everything I had done before the surgery. Good luck, and don't worry!