Just diagnosed

[GABennett]

Hi. I have recently had an MRI scan due to hearing loss and been told by ENT consultant that I have an Acoustic Neuroma of 1cm. He has referred my details to another consultant (one week ago) and I am waiting to hear further. I live on the coast in North Wales so am unsure of where I will be referred to! I don't know whether 1cm is small or large! I am quite surprised to find myself feeling quite worried about what will happen (I'm not usually a worrier). I suppose what worries me most is the possibility of facial nerve damage if I have to have surgery. Is Gamma knife safer in this respect?

[Marauder]

G.K. is a lot safer and significantly less invasive. Brain surgery, to remove the lesion is major surgery.

I had GK in 2013, one year after diagnosis. One year post MRI showed tumour still swollen. I lost complete hearing in the ear before the procedure.

Imbalance is what is most bothersome, as is the tinnitus - which became worse about one year after the procedure.

Everyone has different symptoms and different results from either procedure.

I wish you the best!

Regards,

Dave

[e-mail]

[GABennett in reply to Marauder]

Thank you for your response, I hope your symptoms start to improve soon.

Georgina

[maggieL]

Hi GABennett, It is a difficult time when newly diagnosed with AN as you are in unknown territory and emotions are high. A tumour of 1cm is classed as small and will probably not require treatment at this stage. I was diagnosed at the end of last year with a 1.2cm AN and have been put on watch & wait with a further scan in a years time to see if there is any further growth. Growth is usually slow so there is no need to do anything in a hurry. I suggest you have a look at the bana-uk.com site or BANA on facebook where you find information on the options that may be available at some point and many of us sharing our emotions and experiences on our AN journeys. Most of all do not worry.

[GABennett in reply to maggieL]

Thank you for your response, seems like we are at a fairly similar stage of the game, so useful to get your calm and measured thoughts on the process. I think the waiting to see the consultant is the hardest time. I hope all goes well for you.

Georgina

[Hidden]

Size is relative - a small tumour in one location can be more troublesome than a larger one in another.

The size on diagnosis may be dependent on how soon the sufferer's symptoms became a problem. Dave gave a useful insight into his GK experience but 'Watch & Wait' (W&W) may be the first step recommended.

Tumours can grow slowly and years may pass before treatment becomes necessary. Sometimes they don't grow any further. I'm on my second year of W&W, an MRI due in May will show if there's been any growth over the past 12 months. GK, CK or surgery each have their own risks. Tinnitus, balance issues and various levels of hearing loss are the norm for these tumours

There is a great deal of helpful information on the British Acoustic neuroma Association website: bana-uk.com Details of treatments and treatment centres along with members' personal experiences will also be found.

[GABennett in reply to Hidden]

Thank you for your reply which is very helpful. It's waiting for the appointment to see a consultant that I am finding difficult, have never been very good at waiting for anything I suppose I will have to learn! I hope all goes well for you.

Georgina

[Hidden]

I understand about the waiting! Naturally we all want to know what our own situation is and the sooner the better. Uncertainty can be more unsettling than dealing with a diagnosed problem. Both W&W and any kind of treatment need patience because it can take quite a while to reach the longer-term outcome.

I hope you don't have a long wait to see the specialist but in the meantime why not take a look at BANA's website information?

Keith

[GABennett in reply to Hidden]

I will, thanks again.

Georgina

[bypass]

Well, you already have some useful replies. My advice is (1) do lots of research, (2) do not believe what a surgeon says about radio surgery or a radio surgeon says about micro surgery - get the opinions of at least one of each. When choosing your options, make sure you understand what you are being offered. For example, Cyber Knife was developed to make fractionated treatment simpler and now 10 years after the USA we now have it in the UK - BUT some treatment providers are using it for non fractionated treatments which negates the advantage. You need to understand both what machine and what protocol (methodology) you are being offered. For patient centric and understandable research look at anworld.com/ - Finally if you want to read about my AN journey read anarchive.org/chris.htm

To answer your original questions though (1) a 1cm AN is not large (2) facial paresis is very unusual indeed (but not impossible) with any of the normal radiation treatments.

[GABennett in reply to bypass]

Thank you, I will certainly look up the links you have given me.

Regards

Georgina

[keithzx12r]

Hi, I am an old time patient having been diagnosed in 1987, so 28 years ago. I too had deafness in my left ear which the GP chose to denounce it as just due to my age of 50. I persued the matter privately and after a CT scan was told I had an AN pressing on the blood supply to my brain stem. Surgery was the only option at that time, the GK was just coming into use in the USA. Surgery did cause some problems with my facial nerve plus they found two more AN's when the got in there. I lost my acoustic nerve on the left, had facial palsy plus problems swallowing. I hope you can have gamma knife if they decide you need some procedure, a friend of mine had it and had no post op effects at all. My face is pretty straight now but recovery is very slow if there is damage. So I'm 78 now, at least I am here now so onwards and upwards. Keith

[GABennett in reply to keithzx12r]

Thank you for sharing. I think it sounds like GK is the safer option. Still waiting to see a consultant so it will be good to go armed with all this info.

Regards

Georgina

[Hidden]

Hi - am sorry you have been diagnosed and even though I tell you not to worry I know you will. The good news is that ANs are benign and 1 cm is relatively small. Quite often treatment is not considered unless the AN is showing signs of growth or it is around 2cm so there is no need to panic. Although in the past surgery patients have suffered bad Facial Palsy (my husband is one of them) nowadays the majority of surgery patients who suffer palsy find it is temporary and it improves with time. Radiotherapy (there are several types such as Gamma Knife, Cyberknife, FSR) is often used on smaller tumours so you may well be offered that if treatment is necessary. Usually radiation treatment causes the AN to swell initially so it can cause facial problems such as tingling, some numbness and even palsy but hopefully the AN should then begin to die off and as the swelling reduces so should the problems if they are caused by the AN pressing on the facial nerve.

Be prepared though to be monitored for at least the first year as they don't like treating something that isn't growing or causing too many problems. I know this won't stop you worrying but I do hope your AN journey is an easy one.

You should consider joining BANA - we have over a thousand members UK-wide (plus a few overseas) and we have a members' forum on our website and also a members Facebook group if you use Social Media. You will get a lot of support from the other members. I know I couldn't have got through my husband's AN journey without their help and support.

Good luck

Jackey xx

[GABennett in reply to Hidden]

Hi Jackey

Thank you for your informative and reassuring reply. I am feeling a little less stressed about it now. I have been referred to a Mr Tristan Lesser at Liverpool, so will wait for an appointment now to see what he recommends.

Regards

Georgina

[Hidden]

Glad to hear you are feeling calmer about it all. You are in very good hands with Tristram Lesser - he has a very good reputation. Good luck on your journey xx