Living with an Acoustic Neuroma

FormerMember
FormerMember

Hi,

I am just at the begining of my Journey ( 4 Years now ) since Diagnosis,  started as ringing in my ear around 2010, been having yearly MRI scans to keep an eye on it's progress,  just had my latest MRI Scan and awaiting results, ringing is still there but now my balance is being affected a little. ( like the room is moving when i am standing still ) can only think it must be growing to do this, my specialist say's he might zap it with radiation to stop it growning for now? Has anyone else had this done and what are the side affects. I know the end result will probably be an operation and I could do with some advice from whome ever has had this done.

Thanks

  • I'm so sorry you've had no reply to date but this group is not very active. If you look you will see the last replies were December. That aside, I suggest you write in the NEW TO SITE group or the one of the other Brain Tumour groups.

    Best wishes

    KateG


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  • FormerMember
    FormerMember

    Hi, it sounds as the medical team are watching and waiting. If and when they decide to go along the gamma treatment don't be afraid.  It is a fantastic treatment . I had the gamma knife treatment at Sheffield hospital 2 years ago. The first few months, my balance became worse, and I did feel as if I was walking in a drunk manner, but that decreased after  9 months .  You learn to compensate, and learn that a quick head turn will make you unsteady. My hearing will never return to 100%, and the tinnitus in the effected ear is always there, but again you learn to cope.  I have annual MRI and hearing checks, so far no increase in tumour size, so hopefully the  gamma treatment has sorted it.  Good luck. Ellie 

     
  • FormerMember
    FormerMember

    Hi, I just joined and wondered how you were getting on? Had my diagnosis this week, although not seeing consultant until Nov 2nd. I had no symptoms until about 5 1/5 months ago when I suddenly went almost deaf in my left ear, then totally deaf, then back to almost again lol. I am really keen to hear other peoples experiences because all the literature says contradicting stuff. My tumour is only13mm but have constant nausea, dizziness and balance issues and extreme fatigue. I also have had major deterioration in my eyesight but can find no info or testimony on this. Wondered if you experienced similar problems and the time scale they occurred and if you wouldn't mind sharing. If not I understand completely.

    Thanks.

  • FormerMember
    FormerMember in reply to FormerMember

    Hi, I'm wondering how you're doing and what treatment you've received?

    I had dizziness in August 2015 but my GP didn't know what it was so just said see how it goes. Since then my dizziness and lack of balance has got worse resulting in me now needing 2 walking sticks. In the last couple of months I have lost most of my hearing in one ear and have tinnitus. I waited ages for a hospital appointment with increasing symptoms and so had a private MRI revealing a 3mm acoustic neuroma. I have my first hospital appointment next week so am pretty much where you were when you wrote your post.

    Cheers,

  • FormerMember
    FormerMember

    My tumour is now 6 years old. There are various stages of the tumour, balance is one of them, mine eventually went. I have had many scans, all showed no sign of increase in size. I decided against the op due to a documentary I viewed a few months after being diagnosed. A Merchant banker had the best surgeon op on him and went drastically wrong. Nerves were cut that shouldn't have been, a slip who knows but the guy ended up deaf completely, blind,couldn't move any of his limbs ended up in a hammock-AND that made me decide, NO THANKYOU. Recently I had an ear wax suction procedure thats messed me up cus the Quack did it wrong, so advice on that ALSO don't let inexperienced people touch you. Have to go see Hosptal next week to hear what this quacks done??-HANG IN THERE EVERYONE IF U CAN cus its a MAJOR op!!!

  • FormerMember
    FormerMember in reply to FormerMember

    ..shud have read 36 years, not 6 years old.

  • FormerMember
    FormerMember in reply to FormerMember

    Realistic, I'd love to hear more about the operation gone wrong. Was it for an acoustic neuroma? Do you have a link or some details for me to find out more details. Do you remember the name of the documentary?

  • Hi. i was recently diagnosed too, still in the dark to see wich option should i choose, radiation therapy or surgery? what happened to you?

  • hi there i was recently diagnosed as well. guess this tumor has preference for people called Saul. also still in the dark and with the same questions you have. have you been searching so far? i amost about to choose LINAC radiation therapy of 54 gy in 28 sessions. on data its the radiation with the  best long term outcomes.86% of hearing preservation in 5 years and almost 100% on other nerves. do you have an email so we can be in touch? have you made your decision already?

    Cheers!

  • HI Saul,

    Have you started the radiotherapy for this yet?