Acoustic Neuroma

Posted , 6 users are following.

Hi Everyone

My name is Nadeem I am 41 years old and an Electrician by trade, I have developed tinnitus like symptoms in my left ear about January 2015. Initially I thought it might be just a wax or my work related noises might be causing this and ignored it for a few weeks than just home remedies as I am generally quite fit and well and look after myself and try not to bother GPs. But in this instance no difference in my ear so booked an appointment with gp he checked throughly and advised no wax no infections etc so reffered me to ent specialist. Got an appointment in another few weeks time. He did hearing test b4 I see him than slight deterioration in left ear but been told try to live with it as there's nothing in my ear but he asked me if he how if I send you for an MRI scan but everyone I sent so far for this problem there was nothing in their MRI results but I will send you anyway.

we are now in July when I got my 1st MRI scan and after 2 weeks of that scan I received another letter to come back for another MRI with dye injection. Went again and after a month or so received a letter from same ENT to cone and see me. We are now end of September and he delivered the news that it is Acoustic Neuroma it's a small one approx 13mm by 7mm. 

He explained the course of treatment but a team of specialists at Leeds General Infermiry will decide that. Only last week I have received an appointment for 11/01 2016 to see a specialist at LGI.

Any advise will be extremely helpful from previous patients or professionals as if I were to given choice between Gemma Knife and a surgery which one should I take bearing in mind ENT also mentioned that specialist might decide to leave it and monitor it for a few years because it is very slow growing but ultimate decion will be there's.

help plz.

thanks for reading,

Nadeem

 

1 like, 7 replies

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7 Replies

  • Posted

    Hi. I too was diagnosed with this type of tumour, but on my balance nerve. After many years of infections? Wax build ups? I constantly felt a fulness in my right ear. I had radiotherapy to shrink the tumour, the size of a plum, last December. I was offered an op, but the risks, in my case, were too high. It is shrinking, but slowly. If it is growing, get treatment sooner rather than later. If it is not, many people have no problems. I wish I had created more fuss and been taken seriously at an earlier stage. It has eroded some bone and my brain stem is pushed to the left. I am now totally deaf in that ear now too. My balance is bad and I find some days I have nausea. My case is probably quite extreme, but dont just ignore it. At least make sure you are monitered regularly. Good luck
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    • Posted

      Hi Alison 

      Thank you very much for your reply and advice, will see what they say at LGI. But will try to keep on top of things as since diagnosis it's only been a few months but symptoms seems getting slightly worse or because I now notice it too much, also a sharp needle sting like feeling has also been noticed in the last couple of weeks in the same ear. Will try to monitor everything happening in that ear from now on specially until I see a specialist in January. As I am working full time don't notice anything at work etc but at home specially weekends it seems it all builds up. No problems with my balance etc as work on ladders all day long.

      Once again many thanks. 

      Nadeem

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  • Posted

    Hi Nadeem, you are in same situation as me, but I am 74 , I am on the watch and wait and have just had second scan after 6 months wait. Luckily my AN had not grown at all so they will see me next year. It is about 1 cm in size.

    As each case is very individual, you will need to read all the web info you can and listen to the professionals, there are a lot of people out there who have had both types of treatment and relate their experiences,

    As you are still young you will need to consider the consequences of all treatments and how they will affect your lifestyle. You don't say if you have family or partner. I Don't think this is something you can decide in an instant.

    Please let us know how you do, we will all wish you the best of luck, cheers Del

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    • Posted

      Hi Del

      Many thanks for taking your time out to reply. Have read all the discussion in this forum yes you are right all cases are different with relate to their experience. As I am a family man with three young kids also self employed, working full time so a lot to think about before any decion can be taken, as I have lost 5 family members including my mum 3 uncles and my brother-in-law, all in nearly 3 and a half years. So a sad time to come to terms with,  but life goes on. Sort of trying to hide it from family yet, only couple of people know about it that includes my wife a sister and a brother.

      Keep me in you thoughts/prayers

      will keep you updated.

      Thankyou once again.

      Nadeem.

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  • Posted

    Gd to clear it of at an early stage.lossing earing is no joke.
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  • Posted

    Hi, did you have any other symptoms at all, I've been getting bad headaches and wondered if it could be this! I had a ct scan in June because of headaches and it picked up nothing also had a hearing test with ent which picked up a cookie bite in both ears basically couldn't hear mid range sounds which he said was strange but nothing to worry about just would need a hearing aid sooner rather than later, I've come across this condition and convinced myself it's what I have for some reason, I salute you for being positive and strong x
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    • Posted

      Hi Emma 

      Headaches aren't that bad just usual ones for me, nothing of a major concern, when I went to my ent they did a hearing test mine was low range deteriorated which he said not too bad. No other symptoms as ent asked a lot about any family history and do I loose balance etc which never happens I work up the ladder almost everyday as part of my job. Symptoms aren't getting any worse quicker, a my appointment with the specialist is on 11th of January 2016 so will update you accordingly if they give me choice I would prefer just to watch it for a few years to see how it is progressing if very very slow than wait for a few years. Honestly speaking don't want anyone to mess around with my brain for as long as it is absolutely necessary, but the decion will be theirs. Hoping and praying at the moment.

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