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AVM Survivors Network

What to expect....surgery

Hello all,

So it’s official, I’m having my 10th brain surgery. This time it’s the big one a craniotomy.

What should I expect after having it done? Things in the hospital, while home, recovery time? Any tips or suggestions?

Thanks

Andrea,

I can’t tell you about that because I’ve only done the embolisation thing, and I know you’re a master of that, but I want to wish you the very best.

The thing I’ve decided I would do if I ever went in for a craniotomy is not to panic if I lose a bit of functionality when I come round. What I’ve learnt in this forum is that it is a dangerous operation and you can come round with a bleed having happened or with swelling going on or otherwise your brain has had quite an assault, so really needs to calm down afterwards. I’ve read stories of people losing speech when they come round or losing sight but that coming back as they get better. So if you lose a bit of something, don’t think to yourself that that is it. End of. It isn’t. So far as I can tell, it is entirely possible to have such losses for only the while that your brain is calming down.

To be honest, embolization is just as dangerous, really, and you’ve done that plenty. So just treat it the same as an embo.

Be positive and stay positive, even if the surgery throws you a challenge.

Let us know how you get on.

Very best wishes,

Richard

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Make sure you have a good pillow and take plenty of time to rest. It was a difficult surgery for me, but you can do it! Though there is always a risk, trust the nursing and medical staff as they treat you. Give yourself time and space as you recover. You will be in my wife and I’s thoughts and prayers.

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I have had 2 craniotomies and you just need to give your brain time to recover and let the swelling go down before you worry that everything isn’t the way you think it should be and don’t be afraid to rest a lot as your brain is going to need a lot of rest afterwards.

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Hey Andrea,
I have given each comment here a +1 as each makes their own very valid points.
DickD: “…not to panic if I lose a bit of functionality…”
Randombeggar: “…It was a difficult surgery for me, but you can do it! …”
Mike5: “…you just need to give your brain time to recover …”

A point I’d also like to make here is that it can depend on just where your AVM is. If it is on the outer surface of the brain the impact can be less than if it’s deeper within the brain. My initial surgery was less invasive and although the recovery was difficult the following operation was more invasive and that recovery was really difficult.

The common thread with all of these posts is ‘Rest’ and lots of it. I recovered OK from my initial operation after a few months, I wasn’t 100%, but OK. Stupidly I thought the following surgery would be the same and tried to push my recovery. BAD idea. My body was giving me signs but being an arrogant male, I didn’t listen to my body, I didn’t read the signs. My theory was I needed to build stamina, so I simply pushed harder. Ahhhh, don’t do that. I pushed too hard, too soon and did myself more harm than good requiring even more surgery. My body was telling me “Laydown or I’ll put you down” and it put me down HARD.
I’ve said it before and I’ll say it again “…That thing called ‘recovery’ is a marathon, not a sprint. If you sprint for the first kilometre of the marathon, you’ll have no energy left to complete the race…” slowly, slowly is the only way. I can say that now as I’ve now had 6 neurosurgeries (and by the sounds of it another on the way). None of them have been easy but I know I can make them more difficult than I need to by forcing my recovery.
Best of luck with it all and please tell us how it all goes. Your feedback may assist others going through this journey.

Merl from the Moderator Support Team

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Thank you! You are so right. I’m definitely a veteran in the surgery department lol. I just have to remember not to panic over anything.

XO Andrea

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