Hello everyone, new AN in Australia!

[elandal]

Hi to everyone.
Ive just been told I have a 6.4mm AN and have just joind the forum (apologies if I have done this new topic wrong)
Im devastated and have had a rough few days.
I'm so glad to have found you all, as i feel like the only person in North Queensland with one, and I might be!

I'm scared silly about surgery especially after dashing to Melbourne to see a surgeon. He was very anti-gamma knife which I currently am very keen to explore, he basically dismissed it.

I'm 43 with 2 young boys and am experiencing hearing loss and tinnitus, which if you offered me to live with from now on, I'd snatch your hand off.

Ive been told to watch and wait for 6 months, but am struggling to do that , so have booked an MRI in 3 months and a consultation with a gamma knife chap soon after.

Would love your advice on gamma knife treatment as my gut is telling me thats the way to go.

Many thanks, Al.

[arizonajack]

Welcome to the club that nobody wants to be a member of. You'll find plenty of support and useful information here. You will, of course, have to do your own research and make your own decision about your course of treatment.

Reading our stories will put a lot of things into perspective for you. You can read mine at the link provided below.

You have a small AN. That's good. You are already experiencing hearing loss. That's not good.

I was completely deaf in my AN ear by the time I was diagnosed and my tumor was only a few mms larger than yours.

Is it possible to save what's left of your hearing. Unfortunately, nobody can predict that for any particular person, you can only read about the studies that address the statistics of hearing preservation with regard to the various types of treatment.

Check out the Acoustic Neuroma Association of Australia (ANAA).

https://www.anaa.org.au/

You can find other support groups in Australia by googling.

If you are interested in Gamma Knife, according to the ANAA, "Australia currently has two Gamma Knife installations, one at Macquarie University Hospital in Sydney and the second at the Princess Alexandra Hospital in Brisbane."

You can find other facilities of all types listed on their website.

 

[PaulW]

Some good news...
The president of the Australian Acoustic Neuroma Group is living in Townsville at the moment and they are having support group meetings up there.
I am in Port Douglas on a conference arriving tomorrow. I have a few hours free tomorrow or Thursday morning in Cairns if you want to catch up. Send me a personal message for my details
At 6.4mm no need to panic, and Gamma knife can certainly be a good option, observation depending on your situation could be an option too
There are a number of doctors in Melbourne that perform surgery I am sure the ANAA can put you in touch with some members and their experiences, which is varied.
Contact the ANAA
Definitely join the ANAA Facebook page lots of supportive friendly Australians there me included.
https://www.facebook.com/groups/740322402648020

[SP]

Hi Al,

It's definitely a shock getting an AN diagnosis; I hope that having some support here might be somewhat helpful to you. It's a really good idea to take your time & consider your options ...and what is really important, is what you feel most comfortable with moving forward...

I live in Sydney with what is considered a large AN, and in 2014/15 I did all the rounds with the Sydney surgeons, I also consulted with the Gamma Knife people at Macquarie and in Europe (via mail) and also consulted the Cyberknife people in Perth & ultimately the CK specialists in Stanford (USA)... please feel free to contact me if you would like any more info here.

I found that all the local surgeons I spoke to (and there were many), were as you say, dismissive of radiation options (at 43 years old they told me it was not a good idea). Finally I had my CK treatment completed at Stanford just over 12 months ago and so far so good...

take good care,

Stella

[owlsdownunder]

Hi Everybody
new to the site also and I'm considering my options, a little intro
I'm 45 living in Sydney, Australia and developed some facial paralysis in the left hand side  of my face about 30 years ago when I was a young fella at school back in the UK
for years and years I was told by the doctors I had bells palsy and just accepted it was tough luck

about 11 years ago whilst living in Wales back in the UK I met a new local doc (GP) and he was convinced that it wasn't bells palsy and wanted to investigate things a bit further. had a few tests and eventually I was admitted to hospital where they went in to take a look, the intention being if the tumour could be removed from the facial nerve they would do so.

Anyway they went in and took a biopsy (which was tested and found to be ok, benign), I was told they couldn't remove the nerve without risking damage to the facial nerve / hearing. the advice at the time was that the only way to remove the tumour would be to cut the nerve either side and splice the nerve back together. I was advised that this approach at the time was quite new and that given I'd had the tumour for so long maybe it would be better to wait and see what happens in the future. It was suggested to retry in 10 years or so to see how things had progressed.

Anyway that's where I'm at now, and I'm wanting to get this looked at again. my hearing is suffering now and I'm concerned with how things may deteriorate in the future. don't mind saying that I'm pretty scared at the thought of losing what facial movement I do have and all the hearing in the left ear. but I know I need to take this next step.

Its re-assuring reading through some of the posts here that there seems to be more options available now.
will look into CK (hadn't heard of that before). I don't suppose there's a magic table I can just take (like they give out in star trek!

will certainly appreciate any advice on treatment options as I start my exploration of the medical options available

best wishes
Ray

[SP]

Hi Ray,

it's a good idea to research your options... Keep in mind that these may or may not be options for your individual case; but i believe these "new technologies" (to Australia anyway) are worth investigation:

CK in Australia is in Perth:
http://www.scgh.health.wa.gov.au/OurServices/CancerCentre/RadiationOncology/Patient/pdf/CyberKnifePatientInformationSheet.pdf

you'll need a referral from your GP -but i believe you can send the MRI images  to Perth for assessment.

and the GammaKnife is in Sydney at Macquarie University Hospital, http://muh.org.au/services-specialties/gamma-knife/about-gamma-knife-and-us/about-us... you will also need a referral here, and then an appointment to meet them.

best of luck with your decision & please feel free to message me directly any questions etc

Stella