Regrowth of Acoustic Neuroma

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Hi Everyone

Need some advice as doctors say my condition is a rare case.I was diagnosed with an Acoustic Neuroma in 2013 at the age of 29 years.Has anyone been through 4 times surgery to remove tumor only to find out after 25 radiation treatments that the tumor has grown from 4.1cm to 4.7cm in a year. I'm having extreme balance issues,im already totally deaf on the left ear after the first surgery and having vision problems.Can someone please help with advice as to other possible treatments.

Regards

Candice

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13 Replies

  • Posted

    So sorry to read your plight.  Personally, I've never heard of that...is it classed

    as cancer ?

    Try googling it and find out as much as you can.

    Anne

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    • Posted

      Thanks Anne,Its a benign tumor but has regrown after every surgery and not forgetting radiation. Doctors who have treated me cannot determine the cause of why it regrows rapidly although it supposed to be a slow growing tumor.It would be interesting to know if I'm not the only one with this condition.

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    • Posted

      Hi Candice.  I am so very sorry to read of your problem at such a young age and understand your frustration regarding the lack of information on what is a very rare condition.  I have an intra and extra canalicular acoustic neuroma and have been advised that, due to its location, the removal could be extremely dangerous, ie possibly do damage to the face muscles.  I was advised to contact the British Accoustic Neuroma Association - BANA - who would be able to help with more details (I understand there is a joining fee) however am holding off until my next MRI scan to see how quickly its growing. 

      I have also become quite deaf and have a constant 'dizzy' head though have managed to restrict the extreme balance problem by being very careful when moving my head,  I've also found if, when in bed, I remain on my 'bad' side it helps quite a bit.  

      Trusting you manage to find some answers.

       

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  • Posted

    Know exactely where your coming from i havnt had surgery but ive everything else you have.do you fall over. is your tinnitus 24/7.how do you get on driving.ive had mine 3/4 years now. On the wait and watch list. and learning to cope with the frigin side effects. If nothing we both know how the others feeling xx be lucky,
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    • Posted

      Hi,Falling over happens most of the time when someone or something is in the way,I stopped driving for the last 5 months as my balance got really bad and my eyesight is not the same.Due to the size of tumor,I was told cyberknife is not an option.I trust that there is going to be a way forward
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    • Posted

      Hi candice, they killed my left ear off hoping the right ear would compensate but it didnt. Now icant tell where sounds are coming from so i dont go out on my own.that solves many probs.i still drive but cant do long distance any more lm 72 and ive had to start wearing glasses to drive. the plus side to having one ear is sleep on your good one absolute silence (love it) cant hear the other half snoring i wish you lots of good progress with your a/n xx
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    • Posted

      candice, just a thought.when they do away with an ear the tinnitus gets a lot louder 24/7 ????
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    • Posted

      Thank you.As for the Tinnitus I havent experienced alot of that.Are you on any medication to help with side effects?
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  • Posted

    You could try cyber knife. they do on the NH in birmingham nhs hospital.less invasive than surgery. oh deep joy fellow A/N sufferers xx
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    • Posted

      Just a thought on your tinnitus Cnut - have you tried hypnosis?  I have now suffered for 18 years and thanks to being shown how to hypnotise myself (to stop grinding my teeth) I find that I am able to control the intrusion of the raging torrents, bird tweeting, etc. Could be worth a try though doesn’t help with the other AN side effects, believe me I have tried!
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