Hello all, I’ve been an active reader, myself diagnosed with brain AVM late last year. Unruptured, left frontal lobe and waiting for surgery later this year. I was optimistic to be honest, understood different outcome possibilities (aphasia etc).. all these were discussed with my surgeon and risk of death is similar to other surgeries, it wasn’t something we spoke about a lot and it made me assured and confident.. he has done brain AVM surgeries on adult and children and shared worst that has happened so far is a stroke and even so, patient was already bleeding and size of AVM was big.. in short, i was mentally prepared. Until news about Lucy Markovic. Has anyone else waiting for surgery been affected? I’m worried, back to before….. I have so many questions… is it due to her previous radiation treatment? Sorry if I don’t make much sense, typing this while trying to get a grip on myself.
Hi @Aisyah
I’m afraid I was ignorant of Lucy, though I can see from the news articles that she was an amazing model known across the world.
Unless we were to know more about Lucy’s condition, there’s no way any of us should go round comparing ourselves with her. The complexities of her surgery are best known by her surgeon and maybe her family rather than the rest of the world.
I have to say that when I joined here getting on for 9 years ago, the balance of people coming out of surgery with few to no deficits compared with those coming out with something significant or serious seemed much closer than it does today. I reckoned that for each story I read on here that encouraged me, I found another that was perfectly discouraging, to the extent that my wife said to me on at least one occasion, “I’m not sure hanging round there is really helping you.” I did walk away from here a few times when things were hard but I came back because on balance I got more encouragement, I had the opportunity to talk about my fears, than if I had only my wife and irl friends to share with. As Ben’s Friends take on interns from time to time, I still tell the interns that if it gets a bit much reading the stories about patients, take a step back. It doesn’t always help to be here.
I tend to feel, in this community, that we have a much more positive balance these days than back in 2016. I don’t know whether that’s because we’re not providing as supportive a space for those who are struggling more, or whether it is indicative that people are having better outcomes overall and/or making more informed choices, but the danger that Lucy was in is our danger: it is a risk to pretty much any of the brain AVM treatments and some of the investigations. It’s probably important to know that but often as important to not dwell on it. We have to make that almost impossible decision whether to act or not to act, whether to choose this route versus that route. Nobody can see down the road far enough to know where any of the roads from here lead, though doctors will tell you in their own coded way whether they are in favour of one course of action against another.
It is a terrible thing to lose someone like Lucy. It’s a terrible thing to lose anyone.
I hope talking about it all helps a bit.
Very best wishes,
Richard
Hi Rick! Thank you for your reply! You write really well and I somehow find peace in your words and touch of reality- we don’t know what really happened and that, yes brain surgery, like all surgeries, come with risk. That, however, shouldn’t be what we focus on. We have 4 young kids, and surgery to me, is really for them 
..