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Gamma knife treatment for acoustic neuroma

Posted , 5 users are following.

dolores89065
dolores89065

l have a23mm rounded neuroma and l am awaiting gamma knife treatment My surgeon has informed me that the success rate is 80%asopposed to90% for a smaller sized tumour He also said that when a larger tumour is treated it can become guey and leak  and  a shunt may be needed This has reply scared me but he would recommend  radiation as opposed to open scull surgery He says there would be less complications This guy will be doing my actual treatment in Leeds l would appreciate comments from anyone who has had gk treatment for a similar size of tumour

0 likes, 12 replies

12 Replies

  • alison28608
    alison28608 dolores89065

    Posted

    Hi. I am trying to respond but my post keeps gettting lost. I will try later.
  • alison28608
    alison28608 dolores89065

    Posted

    My tumour was larger and was not detected until I went deaf on that side. However, 18 months later, I am ok and it is shrinking slowly. I opted for radiotherapy. Not pleasant but I felt I had made the right decision. Good luck
    • dolores89065
      dolores89065 alison28608

      Posted

      Glad to hear your experience was successful Alison According to my research gk is a painless procedure What did you find and did you have it done in Leeds?
    • alison28608
      alison28608 dolores89065

      Posted

      In Edinburgh. I also have osteoperosis and the tumour is on the balance nerve. The medication I take for my bones mean healing is a problem. I was feeling sea sick but I can now stand on one leg and bounce a ball 100 times without falling over. Stay positive. The NHS in the uk is excellent when we need this type of treatment. Good luck
    • dolores89065
      dolores89065 alison28608

      Posted

      I also take medication for osteoporosis and hypertensionDid you have gamma knife or cyber knife Alison My balance at the moment is fine what was yours like before treatment If you can do that ball activity you are doing extremely well now and may it continue
    • alison28608
      alison28608 dolores89065

      Posted

      I only had the radiotherapy because my bones dont heal so to cut a section out of my skull would not be ideal. I had noticed that if I looked up when I was walking I vered off to the side. Still do but I did latin american dancing since childhood and I think that has helped. Dont want to fall as I alread have 2 fractured vertebrae and a broken toe before having the osteoperosis diagnosis 5 months after the tumour diagnosis
    • dolores89065
      dolores89065 alison28608

      Posted

      You seem to have had a rough journey but thankfully things are improving for you Time is a great healer l am going to go forward in a positive manner Worrying  won't help matters and when negatives come our way we somehow get the strength to cope

    • alison28608
      alison28608 dolores89065

      Posted

      Yes we must stay positive. I believe it has effect on the outcome of most illnesses, conditions or diseases. Our immune system helps our recovery and a strong positivity helps our bodies repair itself.
  • Olizzieo
    Olizzieo dolores89065

    Posted

    Hi Dolores, I haven't had surgery but am an audiologist who recently saw a client in the same situation. Don't be scared of any of it. If you are one of the 20% that it doesn't work for, there is then the option of open skull surgery. This used to be the only option and is also very safe. The radiation therapy can knock your balance around but you will recover quickly as the body learns to rebalance. A shunt is used in many surgeries when discharge of any kind needs to be released. It is nothing to be frightened of. It sounds like you have a very good ENT so trust in them. They are a very clever group of specialists. After you have recovered from your treatment, look at getting a Phonak CROS device as most people find them very helpful to hear from the ear side that has the neuroma, when the sound is directed to a hearing aid in your good ear. It means not having to always rely on turning your head to hear. Good luck. It will be a rough couple of weeks but in 20 years I haven't seen any complications with removal of acoustic neuroma's. Take care xxxx

    • dolores89065
      dolores89065 Olizzieo

      Posted

      Thank you so much for those reassuring words Olizzieo l feel much better already  lf a shunt is needed does it only be put in temporarily or is it apermanent fixture My audiologist is fitting 2bte oticom hearing aids My hearing  on left side is practically non existent 3 word recognition out of 18 Left side below average for my age 57 yrs The hearing aids will have aplastic mould in ear You probably  understand the kind l mean A cross device was discussed  but he thought the other was more suitable for me  Hopefully l will have them in a few weeks
    • Olizzieo
      Olizzieo dolores89065

      Posted

      I don't know about the shunt being left in or removed. Your ENT would be the best one to ask. When you have very poor speech discrimination - as you said you have for your left ear, the only thing you will possible get from a hearing aid is sound awareness - so you hear a vehicle coming towards you when you cross a road and possible ability to localise (tell where a sound is coming from.) Has your ENT given any possibility of the hearing being saved in the ear with an acoustic neuroma? If the hearing completely goes after treatment, then there is no point in having a hearing aid on that ear so make sure you are able to return the hearing aid and exchange it for a CROS, which will be of some benefit. If you have hearing, I think it is important to try a hearing aid on that ear but because of your poor speech understanding you may find little point in wearing a hearing aid and need to change to a CROS. Ask your audiologist which CROS they were going to fit. I wasn't aware that Oticon had a CROS aid. Make sure they sell several brands of aids as Oticon dealers are usually owned by Oticon and only sell Oticon. They are great hearing aids if you don't have single sided deafness. The Phonak CROS 11 has shown the best outcomes for single sided deafness, with the Widex CROS being a good cheaper version. CROS aids used to be hopeless but I have found the Phonak CROS 11 is the best so far, in noise. I have copied information which explains why they are better in noise than previous CROS aids. 

      "The new key feature of Phonak CROS II is StereoZoom. By focusing on a single voice in a crowd, it allows for improved speech understanding in noisy situations."

      Please feel free to ask any other questions. Most people don't find wearing a hearing aid helpful but it is important to try it. It's like having a radio station up load and turned off the station. You will receive no clarity and very little useful information. Because the sound from your poor ear combines with your good ear, some people find this of benefit. They are less aware of how poor the poor ear is when combined with their good ear. These people are rare but do end up keeping a hearing aid for their poor ear. Never buy an expensive aid for that ear though as you won't get the benefit, even if it has great noise processing. You have virtually no clarity in that ear so whether the noise processing in the aid is great or basic, you will not get your money's worth from an expensive aid when you have poor speech understanding.

    • pam79739
      pam79739 Olizzieo

      Posted

      Hi Olizzeio, does the radiation take away the balance nerve altogether?  I am in such a state not sure whether I should have surgery or go the Gamma Knife way.  Is the Gamma Knife now better than going for surgery?

      So undecided.

       

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