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AVM Survivors Network

Pre Sheffield Gamma Knife

#1

Hi - new to the site. I was diagnosed with AVM on my left frontal lobe of brain Nov 2017 following MRi after car accident so chance find. Am about to go to Sheffield for Gamma knife but really very unsure whether to do it or not. My AVM has not ruptured ever, I am 52. It is a grade 2 close to the skull so am told good chance to treat but am unsure of side-effects. Has anyone here been to Sheffield for Gamma. What side effects might I expect and I know everyone is different. Thank you

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#2

Hi

Welcome to AVM survivors! I can’t tell you much about gamma knife but we have plenty others here who’ve done that. What I can tell you is that Sheffield is the centre of excellence for radiotherapy in the UK, so you’re in the very best hands.

Have a look in the section in the left margin on Types of Treatment – there’s a gamma knife section – and I’m sure others will answer this thread, too.

Very best wishes,

Richard

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#3

Welcome to the site! I can’t tell you anything about Sheffield, but I have had gamma knife just over two years ago. Side effects vary for a variety of reasons, location, size of AVM being two. The larger the size the greater the scope of radiation, mine was deep on the inside of the left temporal. Size was a grade 1 but location upped it to a 2. I had some things I attribute to the gamma knife and likely a little swelling as a result, but nothing that required treatment. Some odd feelings still but I believe that is as a result of my bleed. I’m going to find out in a few weeks how I’ve progressed. I was 48 when mine decided to announce itself! Take Care, John.

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#4

Thank you both - helps enormously to read other people’s experience. Mine I think is Grade 2 Left Temporal.

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#5

Sara,

I meant for you to have a look in here: https://www.avmsurvivors.org/c/symptoms-treatment/gamma-knife-radiation

Have a read of the various stories that are in here, which will tell you a lot about gamma knife and people’s experience. I know you’ve posted a new thread, so I’ve moved that into this category.

Beware answering posts that are more than 2 years old, as we moved sites about 2.5 years ago and not everyone got used to the new site, so you may not get answers to older stories. But they are a good reading reference.

Hope this helps,

Richard

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#6

I had an AVM repair that was a stage 3. It was repaired at the same time that I had an unruptured aneurysm repair (craniotomy/clipping). The surgeries together took 12 hours, but recovery has gone well. Lots of sleep during recover time, but if you listen to your body, you will do fine. It is much better to address these issues before they rupture than after. Good luck to you.

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#7

Hi and welcome to the site. We are a great source of support and encouragement. I had Gamma Knife in 2015 and am due for my second one in a few weeks. I had no real bad side effects other than a headache that lasted about 3 days. I also felt a real sense of euphoria after the procedure. I think the reason for feeling over the moon was because something concrete had finally been done to address the monster in my brain. Procedures relating to AVM’s are slow and all are different. Try to keep your stress level down and get plenty of rest. Wishing you the best.

Sharon D…

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#8

Welcome to the site. I had Gamma knife in Sheffield 10 years ago. I had no side effects and found the whole procedure, which was done over a two day period quite pleasant. The Gamma part only takes about 20 minutes and is easier than having an MRI, you just listen to your favorite music. There are other tests they have to do before Gamma, and you’ll have a jig fitted to your head so they can rotate to hit the correct spot. I had no problems after the procedure and was let home the next day. I walked from the hospital to the shops and did some retail therapy. I hope this helps best of luck. R

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#9

Hi R
Thank you so much for your reply. Did your hair fall out? Probably the least of my worries but worrying none the less!

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#10

Hi Ragdoll,
Don’t worry about Gamma knife. My hair did not fall out. I had no side effects from Gamma. Good luck. R

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#11

HI. I had 3 lots of GAMMAKNIFE at Sheffield following 4 embolisations (my AVM was 6cm and I’ve had 3 bleeds from it) The last scan showed huge improvement and I am due to have another embolisation which will hopefully get rid of the rest of it. (I was given a 40/50% chance of getting rid of it due to size and location so the fact they now hope to obliterate it is very positive. The GAMMA took quite some time for me as they treated it in parts as it was so big. My first bleed was 9 years ago and my 3rd nearly 6 years ago (all from the same area which has apparently now gone). I do have constant headaches, intermittent loss of feeling in left side, some swelling in my brain etc but I don’t think this is necessarily due to the GAMMA, more the bleeds and volume of treatment required. Yes I did lose some hair but it grew back and I think it does depend on how deep they are treating the AVM…i’m not too sure to be honest but it was only an area not all of my hair. I hope that helps. Please feel free to message me if you want to ask me anything about my experience. Sarah x

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