I feel a bit of a fraud: I had Gamma... - Acoustic Neuroma ...

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I feel a bit of a fraud

GGourmet profile image
5 Replies

I had Gamma Knife on Tuesday and, apart from a lack of confidence walking, the following day I appear to be back to where I was with two very sore spots in the back of my head (the front ones disappeared in about 2 days).

I know I will deteriorate at some stage but does anyone have anything to offer, in terms of what to expect and when it might start?

Instability for sure but what else.

The only thing I’ve really got at the moment is head pain behind the ear, like an ache.

Time of surgery tumour was 12mm having grown from 11mm 6 weeks earlier.

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GGourmet
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5 Replies
flappers profile image
flappers

I can really relate to this! I had 3 doses of radiation on 16th,17th and 20th June on my 2.5cm AN and other than the odd wobble and maybe a bit more fatigue, I’m exactly as I was before the treatment. It’s weird, waiting for side affects to kick in. I understand this can all happen a few months later with swelling but so far, nothing at all really. Woohoo! Hope you continue to feel fine too!

GGourmet profile image
GGourmet in reply toflappers

Thank you, it’s good to see that I am not alone. I sympathise with what you went through, having 3 days of treatment. I found 1 day arduous but having to deal with the horrendous headache after cage removed on 3 days in the same month must have been almost unbearable.

I have many others things to deal with and see a psychotherapist, as I know my reaction to stress is unusual. I appear to block the stress impact. I’m personally affected but my psychotherapist is also surprised about my lack of reaction to things that would have sent many people over the edge. I do wonder if the AN has impacted brain chemistry to have caused this.

Pinkrose1 profile image
Pinkrose1

Hi, everyone is different so i can only give my own experience and for me it was a gradual deterioration. I had severe ear stabbing pain going through my head for many months which the doctors couldn't find a cause, no infection, etc and so it was put down to TMJ and so i just thought i had to get on and live with it. Fortunately the head pain stopped after about a year which i think was the nerve deadening as i went deaf at the time too and that's when they investigated and put me in for MRI. I found the symptoms of unsteadiness had got worse and didn't feel safe stood on stools, etc and started losing my vision a number of times too. My surgery was put back because they found i also had stage 3 bowel cancer and so after i had recovered from that i was able to go for the AN surgery. I had got to the point where i was really struggling to function with brain fatigue and physical strength as it affected my overall health. It's great that yours has been picked up earlier and you have had treatment to help stop it growing. Hopefully you won't need surgery further down the line but if you do i found it wasn't anywhere near as frightening as i imagined. I'm doing a lot better now, 10 months ago i had the surgery and so glad its behind me :-)

musicman5 profile image
musicman5

I had the same experience with no noticeable side effects from GN surgery in May. I'm still working, however, to recover from my craniotomy back in late September.

Margyr profile image
Margyr in reply tomusicman5

Thanks so much for sharing your experience in Ireland and they don’t operate here or talk much app AN but all the symptoms Omar’s so familiar to me

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