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AVM Survivors Network

Going for my Gamma Knife finally

Hi all, I have been quiet on here for a while, as I have been struggling. But on the 12th of Februrary finally go to Sheffield for GK. I am nervous becouse of where it is, there is a risk to my speach. I have been told, could be tempory, could be permanent. I just want it all over and done with, so I can start my recovery. I want to thank everyone on this site for their help and strength, in getting me mentally ready for my battle to come.
Thank you
Mick

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Mick,

It’s good to hear from you and you know I wish you all the best! I’ll be thinking of you on the day and I hope it turns out to be non-event, if you see what I mean. You’ve waited a hell of a time. I hope the zap becomes a turning point and while it’ll take another long time to have a real effect, I hope it all goes the right way for you. You deserve it.

Very best wishes

Richard

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I hope everything goes well for you… it’s a difficult thing that requires immense mental preparedness…

Best of luck…

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Hey Mickeboy, hang in there! I’m glad to hear you got a slot for gamma knife! I’ve been through two gamma procedures and can say, from experience, the surgery was a breeze! There are various points of discomfort but mainly from getting stiff in one spot or getting numb from laying in one position! But nothing harder than a good nights rest, right? :wink: Hoping you have a very successful and easy surgery. My thoughts are with you!

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Best of luck to you!!! I will keep you in my prayers, praying for the best outcome.

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Hi Mickeboy, ive been the same with randombeggar, 2 doses myself, indeed they are a breeze. The drill is a bit weird, and they give u injection to numb the skin, but thats the most uncomfortable. Theres always a risk in any operation, but for us, its a very small one.

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Best of luck Mick.

Lulu
x

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Sending you :yellow_heart: and positive energy! Best wishes!

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Hi Mickeboy,

I had GK last July for a large occipital AVM. Like others said, they procedure itself is a breeze, the angiogram (you may have had one) is the worst part but totally ok. Just take yourself to your happy place!! I’m not a massive meditator but like another poster said mental preparedness is helpful - and that’s not to say this is a scary procedure because for most it’s not. My radiation risks are to my vision and movement on my left. I know these risks are real, but they are moderate and the GK is a very precise instrument. I don’t worry too much about this. Anyone who’se had an AVM bleed probably understands how to enjoy the day you’re in and not worry excessively about what ifs…to an extent that’s a choice. Maybe others disagree this is just my perspective.

Do take it easy for a few weeks after if you can and don’t be surprised to feel wiped out and possibly have some headaches. I personally felt pretty ropey from one week afterward for around a month. I don’t know if it was the stress, or the radiation but Sheffield said they see this a lot and it did pass. Life since then has been great, and I’m awaiting my first scan in March. Not expecting to see any change but you never know.

All the very best for your treatment.
Jonny

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By the way Mickeboy, the team at Sheffield are amazing and make the whole process easy. They’ve done 7,000 of these buggers and my neurosurgeon said they’re amongst the best in the world. You are in good hands!

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Hello @Mickeboy the best of luck with the Stereotactic Radiosurgery on the 12th February.

Don’t be nervous. I had mine done in late November and then early January just gone - had it done in stages. They said mine was risky as it is close to the bit of the brain that deals with coordination. No problems yet!

Fingers crossed the procedure itself doesn’t cause any problems for you.

If this is your first stereotactic radiosurgery, then good luck! The procedure itself is totally silent and painless. However, the frame fitting hurts a bit. They do give you a lot of anaesthetic but there is a sudden pressure change. Hope all goes well.

Samuel x

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It will all go well. We all look great in the “hats” or “halos”! I have a couple pictures of myself while wearing the frame. I’ve told the story a couple times but while I was being wheeled to the area fro my pre gamma MRI, I was in the hallway at the hospital. As people would pass they would steal a peek, as soon as I saw this I would say “G’Day” to them. It provided the nurse and I a little entertainment over the 2 minutes walk! Take Care, John.

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Thank you for all the messages of support, they are all greatfully accepted…
Mick…:slight_smile:

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Mick,

I think you’re up tomorrow, so just want to wish you the very best! :+1:t2:

Richard

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Hello, Mickeboy
I just wanted to let you know I’m thinking about you and hope your procedure went well. I’m looking into whether or not I can have it done on the large AVM that’s all throughout my hand/arm.
I know each procedure (and there’s been many for me) is scarier than the last, at least for me, so I’m proud of you for getting it done.
M

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Hope all went well Mick, thinking about you. Take Care, John

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@Mickeboy

Hoping all went well

Richard

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Hi All, All seemed to go ok, been recovering at home. With one exception… I seem to have trouble at night time, laying down to sleep. I have to sleep almost sitting up. If I try and lay down to sleep, I get really bad headaches. Has anyone else had this, or should I be seeking medical advice…??

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Mick,

I felt the same pre-op. I was struggling to sleep because I’d got pressures on the wrong places because of my AVM. Post embolisation, I think I was better.

Feels definitely worth a chat with the radiology team or the neuro as to what to expect.

Keep the faith!

Richard

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Stay strong, Mick! Sending good vibes your way!

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