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Acoustic Neuroma

Posted , 5 users are following.

pam79739
pam79739

Hello, I was hoping I could get some advice from patients who have opted for the Gamma Knife rather than surgery.  Were there any side effects?  Do you lose your balance nerve altogether? Does the AN grow back again?  The surgeon told me that it would be possible that after radiation there is a possibilty that the tumour can turn cancerous?

Thank you for your replies.

0 likes, 19 replies

19 Replies

  • rpsinghsethi
    rpsinghsethi pam79739

    Posted

    You should also go for the second opinion then only you will be able to decide what to do next?
  • audrey02830
    audrey02830 pam79739

    Posted

    Hello Pam,

    I had Gamma knife surgery almost 3 years ago.

    No problem with the Gamma knive surgery although wearing a halo wasn't the most pleasant experience.I was really pleased when it was removed. I felt very tired for several days after.

    5/6 months later I developed horrendous rotary vertigo,it was quite sudden and frightening.I had no idea where my head was and walking was very difficult.I had pains in my head also.My consultant was very reassuring and kept in constant contact with me.Tablets weren't very helpful.My hearing in the affected ear was no worse, I had very little hearing in it prior to surgery.3 months later I started to drive again but walking in open spaces and the dark is still not perfect.I was referred for therapy to help my balance but the end I went back to Competitive Obedience with my dogs - concentrating on straight lines and circles helped a great deal.

    I have annual MRI scans and so far the reports have said the tumour is reducing. All the literature says the vertigo is not a common side effect,in my case it was/is very unpleasant. I now live what is a normal life but my head always feels as if it is full of cotton wool.Very weird!!

    Knowing what I know now would I have gone ahead with GK,probably yes.3 years later,I am 82 years old and fortunate to have been offered surgery (NHS)and living a normal life.I hate being deaf and the residual balance issues (now much less but still with me ).

    I need glasses for reading only,still drive and take part in all my hobbies. I am looking forward to my first great grandchild very soon.

    I am in the UK and all my treatment was free.I have had no problems with the surrounding nerves in my face /lips etc

    Do what is right for you.

    I think it was right for me in spite of the complications.

    xx Audrey

    • pam79739
      pam79739 audrey02830

      Posted

      Thank you Audrey. When you were offered surgery what did you do? Was it after the Gamma Knife? What was the size of your tumour and how much has it shrunk? 
  • audrey02830
    audrey02830 pam79739

    Posted

    Hello Pam.

    I was never offered open surgery because of my age.8 hrs was too long.

    My tumour was beginning to protrude in to my cerebral fluid and would have,possibly, put pressure on my brain. so Gamma Knife was offered because I was fit for my age.

    Actual size is not considered as important as placement in my case.however it has continused to shrink in size at regular check scans.

    The risk of cancer was quoted as minimal. I didn't find any actual figures to consider.At my age I didn't feel any great concern and thought it unlikely in my expected lifespan.

    You have to take risks in life sometimes.

    Size of tumour doesn't seem as relevant as how it affects your quality of life.

    Having been referred for GK and the actual treatment taking place was only a couple weeks.

    Just consider your options and make the best decision for you.

    There is always the option of doing nothing. !!! Your life,do your research and go for it whatever it is.If I could go ahead anyone can.

    Take care and let me know what you decide .Audrey x

  • Cnut
    Cnut pam79739

    Posted

    Hi pam.the operation can leave you with facial pausy a bit dodgy cyber knife i think is the way to go they do it in birmingham hosp on the nhs .the only one round here (i lve in kent).donthave your dodgy ear killed off .the tinnitus gets a whole LOT louder and you cant tell where sounds are coming from i know ive had it done i dont know if the cyber knife cures tinnitus i myself am trying to decide which way to go ive been with this for over three years im used to the tinnitus and so will you be xx
    • audrey02830
      audrey02830 Cnut

      Posted

      Re acoustic neuroma.

      In reply to Cnut.Gamma knife surgery is carried out in several centres throughout the UK not just Birmingingham.

      I have had successfuk GK surgery.My main side effect was vertigo 6 months post surgery.3 years on my tumour has reduced in size ,my balance has improved.Sadly I have no useful hearing in the affected ear but that was caused by the neuroma not GK.

      I have had mild tinnitus but that along with a few other minor sides effects has largely disappeared.

      Research your condition and ask questions in the RIGHT places for up to date info.

      Was it worth it?In spite of a few uncomfortable weeks mainly associated with balance. YES ,it was for me.We are not all the same.

    • Cnut
      Cnut audrey02830

      Posted

      Hi audrey, gamma knife surgery is similar to cyber knife but not the same they do gk in london and other areas  but not ck i found the only place they do ck on the nhs is birmingham you can get it done privately around the south east but it is 25/30k for the treatment xx
    • pam79739
      pam79739 Cnut

      Posted

      Hello Cnut,

      ​I thought Gamma Knife and Cyber Knife were the same thing?

      ​Pam 

    • pam79739
      pam79739 audrey02830

      Posted

      Hi Audrey,

      Thank you for that information.  I am torn between the surgery or the Gamma Knife.

      ​When you say your balance has improved after 3 years what do you mean by that?

      ​In other words what is still a problem with your balance?  How big was your tumour if I may ask?

      ​I seem to recall speaking to you before but nevermind.

      Pam

    • Cnut
      Cnut pam79739

      Posted

      Nope gamma is old hat cyber is the new kid on the block xx
    • audrey02830
      audrey02830 pam79739

      Posted

      Hello Pam,The importance of my neuroma was that is was beginning to intrude close to my cerebral fluid.

      The vertigo is a known as a side effect but said to be rare and I was advised that it could occur 6 months ish later. .It was just over 5 months when I one day reached out to pick up something and my head arrived before me.I hadn't actually moved !! 

      I was very frightening for a while because I never knew where my head was going to be and I had 3 very difficult months.I was hugely supported by my consultant who phoned me regularly.

      My hobby is dog obedience which means walking in straight lines and turns in various directions .Once I felt  a bit better I went back to training my friends supported me when making turns etc and somehow my brain began to understand.I think for me that was better than the formal brain training offered because the waiting list seemed endless.I always knew my dogs would be useful !!!

      I do still feel a little unsupported in large open areas  and in the dark but by and large I am fine.It shows how useful eyes are in helping balance.

      I was offered both types Cyber and Gamma Knife but Gamma was much nearer to home for me.

      Would I do it again?Yes, I think so.

      Open surgery wasn't an option because I am rather old for long periods of surgery.

      Good luck whatever happens x

    • pam79739
      pam79739 audrey02830

      Posted

      Hi Audrey,

      ​Thank you for your response.

      ​In your research before you went for the Gamma were you told that surgery would have been the 1st option if you were younger? Through chatting to your Doctors and other consultations did they ever say which they thought would be the best route to take?  

      Pam

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