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Acoustic Neuroma - partner diagnosed, been on watch and wait. Last scan shows its growing still.

Posted , 3 users are following.

Lifestooshort
Lifestooshort

Can anyone offer any opinion on Gamma Knife treatment. My partner can go ahead to try this but is struggling to make a decision. Thank-you

0 likes, 8 replies

8 Replies

  • alison28608
    alison28608 Lifestooshort

    Posted

    Hi. Can't offer a response to what you ask, but I had radiotherapy treatment to mine and 16 months later, it has shrunk and is continuing to shrink. Mine caused deafness in one ear, due to its position, and perhaps if I had had the treatment sooner, I may have retained my hearing. My advice, from my experience, is, dont wait. Mine was undiagnosed, despite frequent visits to ENT and my GP.

    Best of luck and I am happy to tell you about my experience if it would help. Just don't know and was never offered Gamma Knife.

  • Olizzieo
    Olizzieo Lifestooshort

    Posted

    http://muh.org.au/Services-Specialties/Gamma-Knife/For-Patients/FAQs This is all I could find. These people should be able to tell you if it is suitable and what the pros and cons are. The ENT will tell you when the tumour should be removed. There is no benefit in having it removed earlier than they suggest. It doesn't save more of your hearing. There are some surgeons that can try and save your hearing during surgery. I am in Australia and I know this is rare, but it is possible so look around and ask. Your ENT should be able to tell you of a specialist that does this. They might not want to lose business, but if it were me, I would want the info to make a decision. All the best!!! It is such a traumatic time for you both x
    • alison28608
      alison28608 Olizzieo

      Posted

      I am sure you know a lot more about gamma knif than me, but I lived with this thing in my head for years. My brainstem was being pushed to one side and the consultant told me before scans etc hydrocephaly was the sign that  a tumour was present. Luckly for me, I could have radiotherapy although it was a  horrendous experience. The tumour was squashing my balance nerve but with exercise I am not too bad. I lost the hearing 2 years before the diagnosis. I would advise anyone, if it is still growing, get rid. Mine was at the end of the scale for treatment and if I had not demanded an MRI when I did, I would have had to proceed with an op and all the problems that could cause. I had a 1in 3 chance of sucess with the op. Too high a risk.
    • Olizzieo
      Olizzieo alison28608

      Posted

      Tumours are dangerous once they start putting pressure on other parts of your head but when an ENT is watching the rate of growth, it's very safe. It still stuns me how acoustic neuroma's are not picked up by medical staff when the symptoms are generally so obvious. Glad yours didn't get left longer, but it was negligence that caused it to be that large because your symptoms screamed the need for an MRI.
    • alison28608
      alison28608 Olizzieo

      Posted

      I agree. Lost count of the prescriptions I took, for ear infections I never had. Had symptoms for 11 years. 9 years before any hearing loss and constant pressure in that side of my head and a feeling of fullness in my ear.

      however, after a brief spell of facial contractions 9 months after the radiotherapy, I am doing ok. Just wish I had shouted louder at the time

    • Olizzieo
      Olizzieo alison28608

      Posted

      Websites like these will hopefully make sure no one feels unable to demand action from medics. It's a lot easier to stand up for yourself when you have others behind you. I hope things get better and better for you with time xx
  • Lifestooshort
    Lifestooshort

    Posted

    Thanks everyone. It's so difficult to know what's best to do. Has anyone heard of any potential risks with surgery if he has to have it after Gamma Knife? Thanks again.
  • alison28608
    alison28608 Lifestooshort

    Posted

    Hi. I was told, that if I needed surgery, after the radiotherapy treatment, it would be more complicated. Perhaps the same with Gamma knife, but I really dont know. I suppose there is always a risk of infection and because  it is the brain, more risk of nerve damage etc. Arrange a consultation with your neuroligist and take a list of all your questions. It is difficuilt to remember everything to ask, when you are there. Good luck to you both.

     

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