I was diagnosed with AN 4 years ago, ... - Acoustic Neuroma ...

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I was diagnosed with AN 4 years ago, grew slow to start but now bigger, been referred for radiotherapy, anyone had this?

Rebs2907 profile image
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Rebs2907
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Marauder profile image
Marauder

I had G.K. almost 1 year ago; what would you like to know?

Rebs2907 profile image
Rebs2907 in reply to Marauder

I have not been told much about this procedure, have been told about the risks involved with surgery. I have an appointment for oncology at Edinburgh Royal 2 weeks today and just very nervous. Was meant to be Sheffield but now they have just started in Edinburgh which is good for me. Over the weekend the hearing in the AN ear has gone

Hello. I had Gamma Knife at Sheffield, three years ago, & can't fault the care I received. I wasn't sure whether you were referring to GK, but if that is what you are considering, I too would be happy to answer your questions.

lupie-Cathy profile image
lupie-Cathy

Hi I had Gamma Knife in December last year at Sheffield they were great and I can't praise them highly enough. Unfortunately I'm one of the 25% who still go on to lose the hearing in that ear, I have very little useful hearing left in the AN ear but there is a 75% chance of keeping the hearing so it's still a good thing to go for. I have some side effects such as Fatigue and recently have had a bout of Vertigo, I also have some facial nerve involvement but I already had that before the treatment. On the whole I have recovered very well and am looking forward to having my 1st MRI since the treatment in 6mths time

Rebs2907 profile image
Rebs2907

Hi, I have lost the hearing in the AN ear 2 days ago. I was meant to go to Sheffield but have been referred to Edinburgh oncology 2 weeks today. Have not been told much, just want to know all about it, risks, recovery time etc.

Marauder profile image
Marauder

Hi Rebs2907: the procedure itself is a piece of cake. They will attach a head frame with four pins (painless) then shortly after you will have another MRI - then after all involved look at the results and the Gamma Knife is

prepared for you, you will go into it It's like an MRI only larger (not as confining) and no noise.

After that you will likely be able to go home. No pain at all.

The lesion or tumour will swell up after the procedure and takes a year or more to reduce to original size.

I'd also lost all hearing in the A. N. side. Thanks to bi-cross hearing aids by Phonak it's made hearing bearable in most situations. My vertigo is worse now; they are hoping it returns to base level when swelling has gone down. It's almost a year since my procedure. So am hoping. GOOD LUCK TO YOU!

MaximusPetrolhead profile image
MaximusPetrolhead

I had G.K. in November at Shefiled with Mr Radatz. Can't fault the care, it's a nice hospital and even the food was good.

I've got to say I didn't find the head frame painless, I nearly passed out. Apparently this is quite common with men as the adrenaline kicks in and make you feel nauseous. Once fitted I was ok after a while. The Gamma Knife is a piece of cake, I fell asleep! You can hear the machine adjusting but it quite quiet. You can choose to listen to music, but I didn't.

Afterwards when they removed the head frame I was in a lot of pain for some time. This may be because the frame was on longer then normal due to an IT problem (getting the scan files from the MRI to the Gamma Knife). After two weeks I felt much much better. However in March I started to get pain in the area under my ear, short stabbing pain, also Tinnitus much worse, hearing distorted and balance worse, drunk sensation. Now awaiting MRI in a few weeks, so we'll see what that shows.

Waiting profile image
Waiting in reply to MaximusPetrolhead

Hi I wondered if you had your scan and how things have gone I am due to have Cyber Knife in a few weeks and only have tinatus at present and a little nervous of the side affects. Thanks BRENDA

MaximusPetrolhead profile image
MaximusPetrolhead

Well I've had the results of my follow up scan and it's all good news. The GK has had a significant impact on the tumor. There is nothing to account for my symptoms, but they have subsided somewhat. Seems to be getting better slowly.

Compared to open surgery I count myself extremely lucky to have been offered GK and I am massively relieved that the scan showed positive results.

Marauder profile image
Marauder

Yes I've had Gamma Knife radiation surgery - please ask away.