My Experience Of Acoustic Neuroma

I have along and complex story going back to 2001 My first symptoms were complete hearing loss, severe vertigo, bells palsy (which recovered 99% with intensive physio amazingly my surgeon said considering the pressure the nerves were under) I had 2 episodes were i just couldnt stand the vertigo was so bad i was sick, couldnt eat or drink during this time i had double vision to and I continued to work through all this while having along battle trying to convince my GP i was indeed ill.Looking back i really dont know how i managed to carry on with normal life. The turning point was another trip to the GP and my pulse was 140 beats a minute he finally referred me to ENT after months of visits to him. ENT were so concerned and suspected acoustic neuroma an urgent MRI was ordered. I will never forget the day i went for my results I was 21 years old and being told i had a 3.5cm brain tumour that needed urgent surgery, my life changed forever that day. My ENT consultant drove my scans to the neurosurgeon himself to discuss my case. 2 weeks later i saw an ENT consultant that specialises in base of skull surgery along with a neurosurgeon to discuss my operation they couldnt be sure it was acoustic neuroma and said it may be attached primarily to the trigeminal nerve this indeed turned out to be the case but the pressure had damaged the hearing nerve leaving me totally deaf, attached itself to the carotid artery and brain stem, damaged bone at the base of my skull just to make room for itself. I had 6 hours of surgery in 2002 i had 8 months off work but made an almost complete recovery all be it slow. I had further surgery for the tumour in 2004. followed by surgery in 2006 and 2008 for what i believe is a cholesteatoma a growth in the same area but not the original tumour ( the original cells that were left havent grown back) Im now waiting for my 5th operation which as the old symptoms rapidly return i hope wont be much longer i never again want to feel as ill as i did in 2002
jenny1702 jenny1702
31-35, F
3 Responses May 24, 2011

Hi Jenny-
Thank you for sharing your story. I am around6.5 mo and still recovering from the paralysis (although moderate in appearance, very difficult in daily life with the limited mouth movement). I am pleased that the line has loosened under the mouth and formed a pocket to show movement in the cheek area (I was told is a sign of recovery however, not known how much it will ultimately be). It has been very difficult with two surgeries under my belt thus far.I would invite you to keep in touch of your progress and feel free to contact me if you ever want to talk. I am all about 'paying it forward' since someone did that for me in my most challenging times and still touches base with me randomly. Brie

My tumor was very nasty, I still deal with pain to this day but I try very hard to be strong. You have been through a lot as well. Just hang in there,

Did u also have tinnitus