Acoustic Neuroma

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Mine is a very positive story.

I had tinnitus for a year in my left ear. My doctor said there was nothing to be done and I just learned to live with it. No big deal.

Then on 25th August 2007, I woke up and couldn't hear anything out of my left ear. I had just moved to Dubai and thought it might be the flight.

An ENT specialist did some hearing tests and explained it was nothing to do with the flights as it was an inner ear problem and put me on steroids. They didn't make any difference so I had a gas therapy- I think it's called carbogen - a mixture of oxygen and carbon dioxide. I had this for twelve hours - half an hour on, half an hour off.

The next day I woke up and could hear a bit. I was delighted as had resigned myself to no hearing! I then went to the doctor for a repeat hearing test. He said it was good, but he wanted to send me for an MRI scan just in case.

I went and when it was nearly finished they injected a dye in. Slightly concerned but thought nothing of it really as knew some of my hearing had come back. I didn't really think much more about it until the doctor's secretary rang to ask that I come in for the results a few days later.

Anyway, he told me there was a tumour, 3.2cm by 2.2cm that was usually benign and I had an appointment to see a neuro-surgeon in two days time. It was a big shock, obviously, but I felt like it would be OK and trusted that it was usually benign.

The neuro surgeon told me it was an acoustic neuroma and that it was too big for gamma knife. He explained the surgery to me and assured me that he was 99.9% certain it wasn't cancerous. He said it was a fairly big but routine operation but that I would need lots of time to recuperate. I told him I was going to come home to UK and he recommended a surgeon at the Wellington hospital to me.

I met with the surgeon who was brilliant. Very calm and kind and told me the risks - 50% chance of facial paralysis, 100% no hearing and what the operation would entail. My tumour was just a bit too big for gamma knife and this surgery had only been carried out for twenty years. This meant any side effects after that time weren't known and as I was only 29, surgery was the way to go. He thought he may have to leave a few mm in because of it's position but that would be OK. He explained it brilliantly and my paretns and I felt calm about the whole thing.

On Monday 15th October 2007 I had the surgery. I think it lasted about eight hours as he was able to remove the whole thing. Another surgeon carried out the first part of the operation and the surgeon I'd been recommended did the removal. Both are brilliant and I felt completely at ease and trusted them implicitly.

I only vaguely remember coming round about ten hours later. The surgeon said something (I'm sure he said a lot but I can't really remember!) Then my parents came in and I smiled. Perfect smile with no facial paralysis at all. What a massive relief.

I remember a bit of the night I spent in ICU and a bit of the next two days in my room. I have never experienced thirst like it!! I had morphine drips and IV and spinal drain (to catch any brain leaks!) Was fairly out of it though.

Had a pretty bad night on Tuesday with extra pain injections. My head felt like, well, a bashed in cannon ball really, but once the spinal drain came out things started getting better. I didn't think I would ever feel better as I really did feel rubbish. The surgeon said once the drain was out it would get better and he was right! Wednesday I got out of bed (threw up a bit but felt better after, and was only sick once more through the whole thing), Thursday I walked down the corridor with physio. Was a bit wobbly but OK.

Once the catheter was out the walking got easier and by Saturday I was eating, watching TV and walking upstairs. I was taking oral pain medication every four hours and to be honest, I was ready for them, but it was not blinding pain. I had the odd anti-sickness injection or pain injection in between but Saturday was the last injection. Sunday I had a blinding headache again but by the afternoon I felt much better and went outside (my dad wheelchaired me round a park! I could walk, but was just easily tired.)

It wasn't the best week of my life but I got better every day and went home the following Monday, just one week later, and was told to take just paracetamol for the pain (I had been having paracetamol and tramadol). I couldn't believe it! A nurse took the stitches out and because my head was still numb it wasn't painful in the least. Just a tiny bit weird really. The scar is all along my hair line behind my ear. They shaved a little bit of my hair in the area but the rest of my hair falls over it and even when I tie my hair back, you can't see it. It's incredible really. (Everyone I've shown it to says how neat and small it is.)

At home, I was easily tired and my neck hurt from the position I lay in, my thigh needed penicillin as the scar got infected (they removed some fat from my thigh to put behind the ear where the bone had been! Yuk!)but other than that, my headaches were like the normal ones you sometimes get for no real reason and I could talk on the phone a little bit more each day and my freinds waited until I was ready for visitors. That was after about five days of being home and it was only a few more before I could manage whole days of visits and trips out for lunch!

Two weeks later was my 30th birthday and I had a fairly sedate tea party! But the following weekend I was out clubbing (fairly sober as promised myself I would not self induce a headache like the ones I had the first few days of hospital), and felt great the next day.

It is now five weeks since the operation and I haven't taken paracetamol for about ten days. I've gotten used to being deaf (bonus is that I get great night's sleep) and my tinnitus is still here. My thigh is numb where the scar is and I can't cry in my left eye (new party trick), but there's drops to help and I'm swimming, jogging, going to yoga, dinners out, drinking a bit of wine and generally thinking life is ace. It really wasn't that bad for me and I feel really lucky. Back to Dubai to carry on with my break dancing lessons in a week or two!

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1 like, 38 replies


38 Replies

  • Posted

    Good to hear your positive story..I am also effected by the problem thoguh the size is 2.5 x 2.8. I am looking for good doctors. I hope you share the details on my hotmail email address i.e. username is ****


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  • Posted

    Interesting that Acoustic Neuroma is supposedly rare? I have heard of quite a few people have had this problem!

    My operation at Queens Square, London was done on the 28th of September 2013 after many problems starting in January. The NHS registrar insisted for 2 months it was Labyrinthitis. Then at last a scan CT not MRI because of metal implants. The scan was clear so they say! 6 weeks later I went privately to be

    told there was a growth the size of a golf ball pushing well into the brain (left ear). So he sent me straight to Harley Street., and was told I needed an operation to remove an Epidermoid ( later this was changedto an Acoustic Neuroma).

    Great guys did a caring operation with the result all nerves were left intact save the hearing which was already really bad in the left rear. Taste buds were awful fora few weeks then back to normal.

    It is now December 14th. and the side effects which are with me are - very tired with mid afternoon sleep for 30 minutes or so, slight vertigo, but the strangest on is my writing - it is terrible, I start ok and after a few words the writing becomes small and illegible - my left side of my brain is not working with my hand?

    It appears that there is a delay from brain to hand? is this normal?

    I am very lucky considering some of the effect some people have and although I had to pay most of it myself I had lost confidence with the NHS and went private.

    Interesting to note that over the last few years I have had symptoms which had I realised would have indicated all was not well with my brain i.e very poor hearing in left ear.

    Any ideas?

  • Posted

    Hi Colin..

    Good to hear that all went well for yourself and wish you a speedy recovery.

    I got my surgery done is Salford by some very good doctors, due to the size they had to remove my hearing nerve since the tumor was on top of it. Though I had only 5% hearing left by that time.

    I got my surgery done in Nov 2010 and it took me almost a year to fully recover, since I had balance issue, dryness, numbness, headaches, focus issues. But after surgery your brain needs time to cope up with and get back into normal life style. So its still early days for you and it will slowly go away. I made sure not to use any steroids so my brain starts to work normally without any such pills. Only used to take paracetamol for severe pains.

    Take Care

  • Posted

    Hello, I had a 5 cm AN and was operated on Oct 30th 2013 in Salford Royal, Manchester, they said the nerve was intact when they had completed the surgery, although my hearing in my left ear has been destroyed and blocked off. Since then I have had facial palsy on the left side, this has resulted in a lower eye surgery in Feb 2014, and more to come so I can clsoe my eyelid fully. Am I expecting too much soon for any sign of movement in my face? its been nearly 5 months and theres little sign of movement. My balance can be wobbly when walking far, and in shops etc I can a little disorientated, is this normal? Finally, the tiredness, I do stuff I would consider normal duties and feel washed out and have naps in the afternoon, I am worriesd about my eventual return to work and how thisd will affect me. Can anyone please give me some advice, guidance??I is getting me down and I do feel my confidence is going...
  • Posted

    What an interesting set of posts there and with different outcomes..I had Gamma Knife surgery in September 20 14.I was, ,and still am, tired after but mostly I feel depressed and withdrawn.My hearing in the affected ear is no worse and my balance is fine although I do have pains in my head at times.My problems are minimal really and I do feel cheered by that.I am told, probably correctly, that I am grieving for the loss of my hearing and that could be why I am sad. Life goes on and it does get easier for me.I think recovery must be much more difficult after open surgery so carry on being brave and positive,I am sure that you will win in the end.I hope the dancing goes well !!
  • Posted

    I am facing into the very same situation on 13th April 2015, having been recently diagnosed. I'm a 54 year old male, and have been treated for what was believed to have been on-going ear infections since April 2014. I have suffered 90% hearing loss during this time and hadn't heard of AN until my diagnosis. A long and difficult road awaits me, but hoping that the result at the end will be good. Have accepted the inevitable hearing loss at this stage. However, I am anxious over facial paralysis which is an increased risk. Thank you for sharing your story. It has greatly helped me to prepare for my treatment regeime. Would be interested in finding out how you are today, some years on post-surgery? Kind regards. Mike!
    • Posted

      Hi Micheal - I'm Jane and newly diagnosed as having a small as yet! AN

      it's been a difficult few weeks and know I face a long difficult road ahead as docs are taking the watch and wait approach - even though my current symptoms are quite distressing at times I'm really trying to

      stay positive!

      If you'd like to chat further let me know

      jane x

    • Posted

      Hi Mike, 

      Hope u r doing well.

      Recently my father was dignosed with CT tumor and he is of your age post operation he has lost vision and hearing too. We took an update and found out the tumor is still growing and he is facing health challenges again. I want to know based on your experience how are you coping up with this situation and do you find any major health changes in the following year post surgery. Would love to hear back and god bless we keep in good health. Regards Roy

    • Posted

      Hello Roy,

      I shall be 81 later this month .In September it will be 2 years since my Gamma Knife surgery for AN.

      The rotary vertigo I experienced 5/6 months after treatment took about 6 months to sub side but I still have balance difficulties in the dark.Amazing how much we rely on our eyes for bslance !

      My hearing in the affected ear has deteriorated more but I had little or no hearing in that ear to start with.I am deaf in the other ear (not quite so bad).I have a by cross hearing aid. (A WI FI transmitter in the worst affected ear that connects to the hearing aid in the other ear ).

      My worst problem is that my head feels as if it is full of cotton wool and never clears. It can be very tiring but I try just to think through it.

      My life for someone of my years is, I suppose, very active .I live alone with 3 dogs in a modern bungalow.I maintain my house and garden plus train the dogs.I compete in Obedience related sports.

      I am also a bell ringer. I ring a minimum of twice a week. 42 spiral steps up to the belfry and ring quite complicated methods that require good concentration.

      I still drive my car which means I am free to do as I please.

      I think my best attribute is determination,I just won't be defeated although I hate being deaf.

      I hope your father will findaway to cope with his problems.What can't be cured must be endured.that's what I tell my self everyday.

      I should add my daughter lives in the same village and both she and my son are bellringers so I am sure they would soon tell me if they didn't think I was coping with my situation.

    • Posted

      Hi Jane , I was diagnosed with a A N 18 months ago . it was 12mm at first but my last scan showed it had grown to 19 mm , so 7mm in a year . I have to see the consultant in a fortnight and think I may be offered Gamma Knife surgery, I just wondered what your experiences are and how you are now .    
    • Posted

      Hello Bunker1 ,

      I don't know if my experience with AN will help you but here goes.

      I had GK surgery forAN just over3 and a half years ago.

      Post surgery I felt tired and then just a few pains my head.Quite suddenly5 1/2 months later I developed Rotary vertigo.I knew this was possible but nothing prepared me for how frightening it was.Not helped because my own Dr insisted it was not a complication of my surgery.Thankfully my consultant knew better and kept in touch regularly.I didnt find tablets helpful.3 months later I began to feel better and was able to drive again although balance in open spaces and in the dark remained a problem.I was offered VRT but never.actually received it.

      I am now what passes for normal again but balance can be a little difficult on occasion.I have no useful hearing in the affected ear.

      I have a Bicros hearing aid which helps a little.

      The AN has continued to shrink and I have been discharged by my Consultant unless at any time I need help.

      On reflection in spite of a few set backs not enlarged on here, I am pleased I went ahead with surgery.The biggest trial is unilateral deafness but I continue to cope.Good luck.

    • Posted

      Thanks for the reply Audrey. Hope everything continues to go well for you in the future. How did the actual GK surgery go on the day. I have had a few mri scans to date and don't particularly like the experience but needs must . Is the GK machine similar to a mri scanner ?

  • Posted

    You enquired how am I 5/6 months on from Gamma Knife surgery.It hasn't been an easy time.In December I was feeling well,back to but sadly succumbed to the winter flu bug (not much fun)By the end of January I was well and had begun training my dog for Obedience competition.It requires accurate foot work and turns etc.  With help from the Steward regarding the volume of her commands (I am somewhat deaf) we did very well in our first competition.I was elated but the very next day the world spun away from me.I had vertigo and just had to rest in bed,any slight head movement and the world started spinning again.I have been treated with Cyclizine which does help. The pains in my head have escalated and I can't focus my eyes or concentrate very well. My GP says he does't think it has anything to do with the Gamma Knife. Strange that as it is a rare but known side effect  5/6 months post treatment .Thankfully I see my Consultant next week and will be seeking reassurance. I do understand that labrythitis can last for long  periods of time and recur.Iwill report back after I have seen my consultant.Fingers crossed I will be better soon
    • Posted

      Audrey, thank you so much for your feedback. I am anxious regarding life changing inevitabilities that will undoubtedly arise post treatment. Your comments are really helpful. I am generally a realist at heart, and always prefer to know the facts as they are, warts and all so to speak, as in that way I can deal with what may come my way. I know that nothing in this life can be taken for granted, so being forewarned of any possible changes is so important towards preparing oneself for the future life, with all the curveballs that it may throw. Best of luck with your next Consultant's visit. I hope you have a successful outcome in terms of having the various questions clarified. Regards for now. Mike.
    • Posted

      My experience with gamma knife was horrible. Immediately after everything seemed to be great. 4 months later I lost my balance had to be of work for about two months and go to neuro rehab.

      I consistently had problems all the way up to the time I had it removed. Site wish I didn't wait 3 1/2 years.


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