Gamma Knife : hi, I was diagnosed with... - Acoustic Neuroma ...

Acoustic Neuroma Support

1,808 members602 posts

Gamma Knife

dcfcram profile image

hi, I was diagnosed with an AN in Feb 17. It was found to be growing so I had gamma knife surgery in july 18. Four months have passed since the treatment and I have noticed that my tinnitus has got a lot worse than before the treatment, I have a check up planned in January 2019 to see if the surgery was successful. I just wondered if this is normal after gamma knife and if the tinnitus will perhaps calm down a bit as time goes on. If anyone has been through this I would be grateful if you could just write a few words to let me know how it went and if you had the same problems I have encountered. Many thanks in advance

20 Replies

I think you would have had better success if you would have had Proton Radiation instead of Gamma. Curious, why didn't you have Keyhole Surgery or Proton?

I'm still making up my mind for my 3.2 CM, AN; Proton or Keyhole Surgery.

Both have draw backs

Stay in touch,

Sincerely,

Jack Sunseri

(emailjacksunseri@gmail.com)

They told me either invasive surgery or gamma knife, they said if I have gamma knife and it doesn't work I can always have invasive surgery , just hope it's worked

Sadly that is quite normal as the AN will often swell a little after treatment. See how you are after 12 months, but if you are worried before that see an AN specialist. As fro JackSunseri04's opinion, whilst his suggestions MAY (or may not) be the best, they are not widely available.

dcfcram profile image
dcfcram in reply to bypass

Thanks for the reply, by all accounts GK is highly successful so fingers crossed it will all settle down after 12 months, I'm seeing the specialist in Jan so I will have a word with him about symptoms etc

Hi there,

I had gamma knife two years ago and although my issues before were mainly with dizziness etc I never experienced bad tinnitus. After gamma all my symptoms got worse around the same length of time as yourself. The gamma does cause swelling and therefore it makes sense that you experience side affects. I’m sure every case is different. I experienced problems with my hearing and balance over the following months and can still feel dizzy and have bouts of tinnitus when I’m not feeling at my best. I just had my yearly MRI two months ago and everything is stable and no further growth. I had swelling of the AN after the gamma but they say that’s a good sign, so take heart. It just takes time for everything to settle down. I feel gamma was the right choice for me and the size of my AN and I’m sure it was the right choice for you. Just hang on in there and let it all settle down - it takes time.

dcfcram profile image
dcfcram in reply to Scots1234

Thanks for the reply, really nice to hear yours is stable, it gives me hope that all will be ok after reading your reply. My AN was 2.1cm when I had my GK , my hearing on the left side has gotten worse but I can live with that, just hope I don't have to have invasive surgery in the future.

Leodo profile image
Leodo in reply to dcfcram

Think you have to expect things to get worse imediatly until the swelling from the gamma knife goes down, this can take some time (3/6 months?longer maybe?) my wife had gamma knife surgery in sept 2017 and the next mri is scheduled for sept 2019, keep an eye on other side effects such as balance issues and hydrocephalis which the wife suffered from but this apparently rare. Ps come on Derby, nice to hear from a fellow ram fan

dcfcram profile image
dcfcram in reply to Leodo

Thanks for the reply, nice to hear from people a bit further down the line than me so I have an idea what to expect

Ellafen profile image
Ellafen in reply to Scots1234

Hi is it possible to explain how gamma knife works? I know I can Google this however it's only text book. Thank you.

Leodo profile image
Leodo in reply to Ellafen

The aim of gamma knife is to zap the Tumor (AN) with a calculated dose of radiation ( radiotherapy). It is to stop the tumor growing but does not remove the tumor. Initially it may slightly increase in size as a reaction to the radiation. Surgeon called it ‘puffing up’ but should then over a period of time begin to diminish, it may always be there but often they have been there along time anyway. The initial increase caused problems for my wife in the form of fluid ( hydrocephalis) . This was treated by inserting a shunt. We are now waiting for the next scan in sept 2019 which will be 2 years after gk. hope we will see a decrease in size but sometimes a darker colour indicating it is dying (lack of blood supply). The wife symptoms are not perfect but much improved, hope this helps, I am not medical just trying to support the wife as best I can.

Ellafen profile image
Ellafen in reply to Leodo

I appreciate you taking the time to reply. I do hope things improve for your wife. I understand how emotional it is trying to support your partner. I do hope you receive good news in September.

Kind regards

Lisa

Leodo profile image
Leodo in reply to Ellafen

No prob, hope it all works out for you

Becksmil profile image
Becksmil in reply to Leodo

Hi, i was just wondering what symptoms your wife had with hydrocephalis after her gk?

Many thanks

Leodo profile image
Leodo in reply to Becksmil

Hi, she was sick most days, struggled with her co-ordination, some days worse than others, balance issues, not a very nice time atall. Are you ok? Do you think you have similar?

Becksmil profile image
Becksmil in reply to Leodo

Thank you so much for replying so quickly, no i don’t have your wife’s symptoms, I had gk at the beginning of November last year and everything was fine apart from feeling really tired but then I got the flu just after Xmas and from there I have had a significant increase in symptoms such as dizziness, tinnitus, full feeling and pressure (all which I’d had at times before) but now the side I had the gk feels burning at times, and around and behind ear and scalp feels tight if that makes sense and I get such a brain fog and just weird sensations in general, oh and occasional stabbing pains in head and ear. I feel off balance and like their is fluid in my head and that my head is too heavy for my neck but I think that is probably just to do with the Imbalance from the AN and after reading other posts I’m thinking it’s normal to have a flare up around this time due to swelling on the AN , also I find if I sleep on the side of the AN it makes the symptoms worse, unfortunately I suffer with severe anxiety and depression and m e and fibromyalgia and from having the flu so badly everything is on a flare up, but I’ve got a real paranoia about getting swelling on the brain or the fluid on the brain as just don’t feel strong enough to deal with anything else at the mo and anxiety couldn’t cope, but because I’m so aware of the feeling of it all I can’t stop worrying and thinking about it. I am sure a lot of it is to do with my other health problems as well like the brain fog etc but all a viscous circle especially when the anxiety takes hold. I just hope it all settles down soon, Sorry for the long post and the rambling 😊

I hope your wife is doing well now.

Leodo profile image
Leodo in reply to Becksmil

I would discuss with your doctor, fluid on the brain can be seen on an mri. The wife is doing well now the shunt is working. She had a 2 year scan and AN is slightly decreased. It is a long road but it can be beaten, hope this helps.

Becksmil profile image
Becksmil in reply to Leodo

Yes thank you, I actually have an appointment with the consultant on Monday so will tell her everything then, thank you again and best wishes

Leodo profile image
Leodo in reply to Becksmil

👍

Sorry can’t help as not had gamma knife, but whatever treatment we all tend to end up with tinnitus, sorry

My last scan was feb 2019 and I was told my AN was stable, the tinnitus is still annoying but I have found I dont suffer with any dizziness anymore. I have another scan planned in a few months time and will keep you posted. Hope everyone is ok

You may also like...