I have just been diagnosed after havi... - Acoustic Neuroma ...

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I have just been diagnosed after having an MRI. They say the tumour is 15mm x 17mm, does this class as a large one?

GrandmaAnn profile image
8 Replies

I am waiting for an appointment at hospital, LGI in leeds, with consultant mr kelly, who will apparently decide on treatment. My symptoms are not too bad, hearing loss in one ear and tinnitus. I did have really bad vertigo, about 3 years ago which has left me with an occasional balance problem but nothing major.

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GrandmaAnn profile image
GrandmaAnn
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8 Replies

Hi Ann, sorry you have been diagnosed with an AN. I don't think 17mm is classed as particularly large. My husband's AN was 45mm when treated. Quite often, if the AN isn't causing drastic problems, patients will be monitored at least for 6 months to see if it is growing. Some ANs grow a little then stop, so don't be surprised if they suggest a further scan in 6 months or so to see what is happening. Normally if an AN approaches 20mm they would probably suggest treatment but there are lots of options (surgery, radiotherapy, radiosurgery) and I am sure Mr. Kelly will appraise you of all of them.

The main thing to remember is ANs are very treatable and are NOT cancer. They are usually benign and don't spread to other parts of the body.

I do hope your consultation goes well. You would get a lot of support from BANA if you joined so do visit their website.

GrandmaAnn profile image
GrandmaAnn

Thankyou for replying. I feel a little better about it. Hope your husband is fine and well.

keithzx12r profile image
keithzx12r

Hi Gran, my neuroma was 2.5 cm and threatening to cut off the blood supple to my brain stem so surgery was needed quickly. Even so I delayed it from the diagnosis in May till October so as not to interefere with the busy time for my business. My only symptom was some deafness on the tumour side. After surgery I had many other problems but "wait and see" wasn't an option for me. Based on that youir tumour appears quite small so that may be an option. Best of luck with your next appt. Keith

GrandmaAnn profile image
GrandmaAnn

Thanks for reply Keith, its such a confusing thing as my symptoms are so mild, just deafness in one ear and a bit of wobbly balance sometimes. I am thinking just leave it alone! I have read lots of stuff about side effects if surgery it seems risks out way benefits! Will have to see what consultant says but really appreciate you taking time to comment.

I'm following this thread as my symptoms are similar to those described by Ann above but mine started in late 2008 with balance issues and 'feeling odd' later followed by tinnitus. I was in Arizona for the winter so by the time I returned to the UK I'd grown used to tinnitus (for which I knew there was no actual treatment anyway) and had largely adapted to 'wobbly legs' and difficulty running/walking in a straight line.

I put it all down to 'one of those things' of getting older (66 now) and only this early summer after my hearing deteriorated suddenly did I visit a GP. Referral to ENT brought a hearing aid, an MRI scan, the detection of an AN and a consequent second MRI with Gadolinium. I have a visit upcoming to review the MRI and am hoping I'll have at least a six month 'stay of execution' to allow the growth rate to be measured.

I've read everything here, and on the linked AN blog, and have similar ideas to Ann - leave well alone unless there's a pressing reason not to. I'll soon see how that idea works out! (I'm also named Keith...)

GrandmaAnn profile image
GrandmaAnn

Hi Keith, sorry delayed reply, I have been really busy! To be honest I may be rethinking my 'leave well alone' philosophy! I am experiencing an increase in the balance issues and earache and headaches frequently now. ( I don't know if its because I know its there though??) Will see what consultant says on 18th November but am thinking will push for surgery and just get rid of it!! I am 45yrs old and generally a very positive person, so am thinking get rid and move on. I understand my hearing will not return anyway but would be nice to get rid of the tinnitus! Hope all is well with you and whatever you decide I wish you lots of luck. x

lupie-Cathy profile image
lupie-Cathy

Grandma Ann, you said in your post that the consultant will decide on treatment, that isn't necessarily true, you have a right to decide what treatment you want and the consultant must refer you if you decide on Gamma knife rather than surgery for instance. Make sure you get what you want and not what you are told to do! research the options and decide what you think would suit you best! good luck xx

bypass profile image
bypass

Lupie Cathy is correct - Often Radio-surgery of some sort is the best treatment option but is not always mentioned by the specialist (as many are surgeons). Make sure you explore all the options before deciding on treatment. Take a look at anworld.com/ which gives an outline of possible treatment options etc.

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