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acoustic neuroma

My mum has been diagnosed with having a large AN pressing on her brain stem.  Let me start from the very beginning. From about a year ago, she had been complaining that half her tongue felt numb and that she couldn't taste properly.  She also had ringing in her ear, so she went to the ENT doc who did not find anything alarming and gave told her that she might have a vitamin deficiency so he presribed vitamins (?) to her and obviously her tongue remained the same.  she went back to him as her hearing was getting weak in one ear too.  he told her that her hearing was getting a bit weak, re her tongue , he didn't prescribe anything.  at this stage she started to feel a bit out of balance, so he prescribed her with balance water pills which, once again did not work. at this stage she started giving up on the situation then from about 5 months ago she started losing her balance quite alot. she's be walking and starts bumping into things and she felt like she wasl walking onto one side.  so she went to another professor who suggested a ct scan.  from the scan a small lesion could be seen, so an mri was performed.  when my parents went for the result of the mri, my sister went with them ( i just had a baby and i had no one to leave her with, so I couldn't go).  anyway, the result was a large acoustic neuroma pressing on the brain stem and according to the neurosurgeon it  had to be removed as it is life threatening if it stays.  according to my sister, when he showed them the mri pictures, it was the size of a walnut so i am assuming it is large.  Now the problem  is here, we live in Malta, Europe and the nuerosurgeon who saw my mum has stated that in Malta they only get about 5 cases a year ( Malta is a very small island, hardly noticable on the map) and the cases they do get are usually not that large and complicated (pressing on brain stem).  so my mum has to travel to london.   all this has happened round about the end of april. about 2 weeks ago she got a phone call from the national hospital in london informing her that she has 2 options either to go up on the 24th June or the 23rd july.  she opted for the 24th June.  she is very scared and tense as we are too.  my main concern is this - from what the neurosurgeon told them, ( I was not there so I don't know the very exact details)  it is life threatening.  but then if is was, how come she got two options from london?   if she opted for the one in july, it would have been 3 months since the maltese surgeon told them the news.  if it is as large as a walnut, would they have waited 2 to 3 months from them to send for her? could it be that as the maltese surgeon doesn't have much experience in this field, did not want to commit himself, maybe it is not as large and dangerous as he explained it to us? i would also like to know please if when you see the actual MRi results, is the image to scale, i mean if on the picture it seems to be the size of a walnut, it is actually that size or is the picture enlarged for a better image?  I am sorry to be asking so many questions but we are all so scared of losing her.  since she has had the news of what she has, her moral as gone rock bottom, she can't be left home alone cause we are scared that she might fall and hurt herself.  she gets the occasional headaches in the morning, which i know are part of the symptoms, and the numbness is not only in her tongue now but on half her face.  my biggest concern is this - is there a big chance that she will pass away during the operation, considering her age and the positon the AN is at?  we have been told that there is a chance of facial paralysis too but we are all willing to accept that as long as she comes back.  we love her so much and all this seems so unreal.
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Avatar universal
i have recently been diagnosed with an AN its 3.4cm x2.9cm x2.4cm so its large. i am really scared and of course thinking the worse, has anyone had a tumor this size, if so how did you come out of it, my biggest fear is not death but the facial dropping/paralysis, will it be a permanent thing or will my face come back up again to next to normal appearance. also can you tell me about the chances of youor eye not fully closing and what they did to stop it drying out and did it eventually heal. thanks so much lisa
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Avatar universal
I am writing this 6 weeks after having an acoustic neuroma removed. I am completely recovered although i have lost the hearing in my left ear. I was reassured that it is not a life threatening operation and although i felt a bit unbalanced and sick (felt a bit like motion sickness) for 10 days after surgery i now feel absolutely fine. I didn't get any facial palsy at all. I was released from hospital 2 weeks after surgery. Acoustic Neuromas grow very slowly so surgery is rarely needed to be immediate, i did loads of research and took my time to find the surgeon i wanted so in the end waited 5 months from diagnosis to surgery which was fine. When i was in hospital i met many people having this surgery all of whom recovered well. i have been told to expect to be back to normal and return to work 3 months from surgery although 1 month on i was 99% back to normal (the 1% being feeling very slightly off balance - but that is improving) I am sure your mum will be fine and London has a wonderful reputation for acoustic neuroma removal. There is an assosiation which you can refer to if you think it will re-assure you - BANA - the British Acoustic Neuroma Association. IT IS NOT CANCEROUS and she will only need a follow up MRI maybe 6 months later or as in my case they have said 1 year after surgery. I wish you, your mum and your family a speedy recovery!
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Avatar universal
I had this operatiion  in january and  recovered very well  from the surgery.  I was 60. I have lost the hearing in one ear but this is an improvemnt as I no loger have the full feeling and buzzing it in.so I can actually hear better.  Still have a bit of a balance problem which is improving all the time. I had a facial palsy which develpoded 2 weeks after surgery but is now 100% ok  Do not worry too much about your Mum. Being in London for the op is the best place to be. Having a supportive family helped me so much and obviously your Mum has your support. It is a frightening thing to go through but she will feel so much better afterwards I am sure All the best to you and your family.
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Avatar universal
Thank you so much for your support and reply.  It has built a bit of courage in me.  You asked about my mum's age and health condition.  She is 65 and suffers from high blood pressure but controls it with pills. she had breast cancer 7 years ago but she didn't need chemo but tamoxifen for 5 years.  on the whole she is ok.  I too beleive that she will be in better  hands in London, apparently the hospital she is going to specializes in neurology so I am sure that their experience in AN is vast. thanks once again and I will be posting with any developments.
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147426 tn?1317265632
I'm so sorry to hear of your family's news, but I don't think it is a dreadful as is seems to you.  I am a physician , but this isn't my field of expertise.  First how old is your mum?  Is she in otherwise good health, or does she have major health problems like diabetes or cardiac disease?

Acoustic neuroma's are not cancer.  They are benign, but because they are growing in a closed space, they do damage by causing pressure on nearby tissues.  They tend to grow VERY SLOWLY increasing by about 1.5mm per year.

Seeing the image would not help any of us here.  It is large enough that they feel it should come on out rather than be watched.  Many times when these are found they are watched for a long time to see how fast they are growing.  She has probably had it for decades before it caused enough pressure to cause symptoms.  She's had symptoms for over a year so that indicates that it is not growing enormously fast.  That it is life-threatening does not necessarily mean it is threatening her life right this minute, but that, if left untreated, it will continue to grow and will eventually threaten her life.  A 3 week wait for the surgery does not seem to be unreasonable (clearly the the surgeons who made the recommendations felt that it could wait that long, even longer - otherwise they would have recommended emergency transport.)

I found a very good article on acoustic neuromas and discusses the risks of surgery.  Over all, the risk of death from the surgery varies from 1 in 200 surgeries to 2 in 100 surgeries.  The risk depends on the center and the skill/expertise of the surgeon.  Her risk will be much lower going to London.  There are other complications which can be dealt with.  She will likely lose her hearing on that side.  It is hard to preserve it in removing these tumors.  Also some of the problems she already has from the pressure, like numbness, loss of taste or dizziness may still be there after the tumor is removed.  

Here is the article from a highly respected neuro-otologist from Chicago, Dr. Timothy Hain:

http://www.dizziness-and-balance.com/disorders/tumors/acoustic_neuroma.htm

If you have questions about the article or don't understand soemthing, just post back.  I'll try to help.  I hope this raises your spirits and hope for your mum.  The picture is not that bleak.  My best wishes, Quix
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