Hi im now booked in for surgery for September amd im really worried about the recovery has anyone got any good outcome stories that they could share im 38 and have a avm on my brain. Thanks
2 Likes
Hey @Lisajane
Craniotomy is a scary prospect, isn’t it? But I think a lot of the worry is the fear of the unknown. It’s a very successful approach and you’ll be in expert hands. I’ll try to find a couple of stories that are great but there are plenty. Obviously, how it goes for you will depend on your situation and sometimes doctors discover things along the way that make sorting you out fully more complicated, so it’s impossible to know exactly how you’ll get on.
One of the things I learned on this forum some years ago was that, having had a craniotomy, some people get a decent amount of irritation go on, swelling and that sort of thing – it is a pretty major assault, after all – and that can lead to symptoms depending on what’s impacted. The thing I learnt is that those symptoms can be related to the swelling and as soon as that fades back to normal, the symptoms go away. So, even if you were to get some weird symptoms post op, you mustn’t think that life is lost: it can be wholly due to the disturbance that has been necessary to sort you out and patience will be the main thing.
I’ll find you a couple of stories.
If you’re worried, just talk about what it is that’s bothering you: it’s what we are here for.
Lots of love,
Richard
1 Like
Here’s the first story that came to my mind from @jasonlisa1837
1 Like
And this is the other story that came to mind from @Bsmom
1 Like
Best wishes to you. Stay positive and practice both physical and mental self care.
1 Like
Hi Lisajane,
Yes I know it’s a scary thing to go through. My son was 20 when it was discovered. Me as a mother watching my son go through this was terrifying, not knowing what to expect. On July 15 he went through a embolization with an angiogram . July 16 craniotomy. July 17 he could rest. July 18 another angiogram to clear the AVM. It was cleared.
July 19 they cleared him to go home.
He did have anxiety taking the staples. Two weeks later.
But I thank the good lord for everything.
I feel if the doctors are doing a craniotomy than it can be fixed .
I asked a lot of questions , you have to feel comfortable with these doctors, but always rely on God. Pray and read your bible for comfort and support. I told my son when he is scared keep saying the “our father prayer”.
He will need to go through another angiogram to be sure it is gone in December .
I will pray for you as you go through your surgery. Try to have faith. My support team was our church members, family and friends.
I hope this helps.
2 Likes
Thank you this has helped hope your son gets the all clear 
2 Likes
Also, we have @mattb as our most recent witness to success:
2 Likes
Thank u
Hello @Lisajane
I had a craniotomy after a ruptured AVM in 2017 when I was 51. I’m certain I would have had the same worries about recovery if I was in your situation. I am enormously thankful that I had a full recovery from the rupture, and the surgery after. I did stay in the hospital for one week post surgery, and then spent 10 days in a rehabilitation hospital for monitoring, therapies, and medication adjustments. I was tired (and irritable) for several weeks but actually felt better every day. I am wishing you all the best in your recovery!
2 Likes
Thank u 
As Richard has mentioned soo many good stories, I thought I’d share my own, now I was worried about my 2nd craniotomy, so I have a bleed and woke up in hospital after the first that one was easy since I cannot remember anything except getting home and then waking !, but the 2nd I got the date in advance and yes this makes your mind start to wonder what if !, but the main thing here to focus on is that these surgeons are the best, there is a reason they are doing brain surgery 
, I had surgery Monday, was walking around 2 days later and out of hospital after a week, no major side affects. Back to work after 8 weeks which was too early, my advice is to make sure after you get loads of sleep, sleep day night whenever you can get it as this is when your body will be healing you. Everything will be fine !
2 Likes
Thank u so much this really helps reading all your stories 
@Lisajane
Hi
I had surgery at 19 and am still living over 30 years later.
Ask about where your scar will be and how big so that you can decide how to manage that.
I was very sore post surgery and even 3 months later I was in pain having a haircut whenever the skin moved. Find a careful hair dresser!
Hope it goes well
Tim
I had a bleed in 2011 & had to stay in hospital for 2 weeks… fast forward a month later & I had surgery to remove the AVM & was discharged 4 days later… moral of the story was I was shocked how quickly they discharged me after such a big surgery, compared to a simple bleed… still amazes me all these years later.
It’s normal to be anxious but I found trying to be calm, letting God take the wheel, staying positive & accepting my fate, were all key in recovery… everyone is different but you will recover.
As silly as this sounds to you right now, I think it’s a blessing that you can have surgery & at some point down the road you’ll agree… it indicates the medical experts can get it removed unlike some ppl out there that don’t have this option to operate & remove their AVM… please keep us posted & sending prayers out your way… God bless!
1 Like
Thank you 
reading all your stories really is a massive help
2 Likes
When are you going in? Is there anything else we can help with? This is what we are here for, you know.
Best wishes,
Richard
1 Like
I go in on the 26th Sept iv got my pre op on the 12th just hearing everyone’s stories has been helping me alot thank u all for taking your time to reply I will let you all know how it goes
4 Likes
Im in recovery op went well im haveing minute of having a numb right leg but it comes and goes hopefully when im fully recoveredit wont happen. Recovery is tough but im getting through it
4 Likes
@Lisajane That’s great news… slowly & steady you’ll get there… God bless!