Struggling to get back to regular life

So my AVM ruptured in June and after 3 long months of therapy I completed my recovery. In August I had my angiogram that showed that the AVM was gone. I was so excited to get back to my regular life…so I thought.

It’s been really hard to get back to work and the things I enjoyed before my AVM incident. My memory is horrible and I feel like I need a break. It’s just so overwhelming trying to get my life back. My mother will not let me take a break from the work force and come back home. She’s upset because I will not have insurance but I will feel better. Now I just feel so alone and I know it’s people out there who can relate.

How long did it take you to get your life back normal or a new normal? Because it’s been 6 months since AVM and I am failing…

Welcome to our community. We have an amazing group of people, with a wide variety of experience. While we have a lot of similarities, we are all different in respect to our AVMs. I found that most people had no idea what I was dealing with, I got support, but not understanding. Thats one of the things I find so great about being here. I can’t say wth certainty when I settled in to my new normal, I spect a fair bit of tie angry, then I started o be a lot easier on myself. My current normal basically evolved slowly. We’re happy you are here with us, you will see many talk of our AVM journey. I look at mine that way. My AVM ruptured in May 2016, I had gamma knife in November 2016 and got the obliterated verdict in February 2019. Take care, John.

Hey Kelly,
Firstly, Welcome to Ben’s Friends
Secondly, you are NOT failing. When it comes to neurosurgery 6 months is still early on in your recovery. This is a time to be kind to yourself. Some people think that neurosurgery is like any other surgery, where 6 to 8 weeks after surgery everything has healed and things get back to normal. That is NOT the case with brain surgery, to add to it all you’ve had a rupture and the physical impact on brain structures due to a rupture can be anywhere from minimal to MASSIVE. So PLEASE, do not be giving yourself a hard time because others do not understand or can’t comprehend the realities of it all. This ain’t no simple ‘walk in the park’ (normal) thing to manage or deal with.

I say all of this because I have had the ‘joy’ (not) of enduring a few neurosurgeries (6 so far). And none of my surgeries nor recoveries have been the same. Even trying to compare my own recoveries with each other is near on impossible. They have all been vastly different. It can be really easy for others to stand on the outside and pass judgement, but the reality is that only you know where you are at. I have lost count of how many times I’ve heard the line 'Well, my friend ‘John’ had one of them and he’s OK, so what’s your problem…?" Not even the dr’s can give an exact recovery time and as I have found, it takes as long as it takes. Symptoms can fluctuate massively from day to day (and sometimes even hour to hour) so to be giving exact timings is impossible.
Another factor in all of this is that no 2 brains are wired in exactly the same way and any disturbance of the brain is going to have it’s own unique impact. I often compare the brain to our body’s computer system. If you opened your computer box and threw in a handful of aluminium foil flakes, what would happen?? Your computer would have short circuits all over the system and that’s if the system ever worked properly again at all. A brain bleed can cause a similar short circuits. Brain matter is like no other matter in the body, so expecting it to heal like a muscular injury or a broken bone is just wrong. For some people things can recover fairly well, for others there can be a long lasting impairment and yet for others it can have a life changing impact.

“How long did it take you to get your life back normal or a new normal?”
After my first surgery I pushed myself and recovered enough to return to my former life. After the 2nd surgery I thought I’d do the same and push myself along, only it wasn’t the same. My body was screaming at me to stop, I ignored it and pushed myself harder to recover. My ego was telling me I was building stamina by pushing, but one day I pushed too hard, something went POP and I ended up back in hospital requiring further neurosurgery. Ahhh DON’T DO THAT, your body will give you signs when enough is enough. Please listen to your own body. This recovery thing is a slowly, no I mean S l o w l y thing. Yes, others are going to have an opinion, they always do, but you have to manage all of this for you, not them. I can assure you the consequences of not listening to your own body can cost you any chance of a ‘New Normal’. My last neurosurgery was in 2013 and although I pushed to get myself back to work, I’ve now been told I’ll never be able to return to my former role. This has been a very bitter pill to swallow and I often question myself if I caused ‘this’ by pushing too hard in the first place. Don’t do that. Listen to your own body.

Merl from the Modsupport Team



I didn’t have a bleed but “just” an embolization. I’d say it took me a few weeks to feel functional but to get back to “normal” took 18 months to two years, so as Merl says, it is still very early in your recovery. A bleed extends things a lot, so hopefully you’ll continue to get better for a few years.

Very best wishes,