My son’s 4th embolisation yesterday went very well and he’s recovering like a champ. His doctors have determined they’ve glued all the feeders they can do so safely, so it’s time to schedule the removal. Sh*t’s about to get very real. These early procedures have been fairly manageable but there’s been a special pit in my stomach reserved for the day they open him up and cut this thing out.
Considering un-ruptured discovery and placement and accessibility in spite of it’s size, I know we have so much going for us that others have not. So I will just say I’m offering mad props to all the parents here for getting through this and helping your kids through it. Because it’s really freaking hard.
Hi! I am just starting this journey so reading your post brings tears to my eyes. My son is only 3 months but we knew something was going on since I was pregnant.
I’m sure it is. It’s difficult enough being the patient, never mind having to make decisions for someone at the start of their life.
I think you’ve done really well to get through the embolisations. In some ways, that’s no less difficult than the craniotomy. When it came to me justifying to myself whether the risk of an intervention was worth the balance of risk leaving it alone v risk of doing something, I got to a space where I was sure I needed mine doing something with. If you’re in that space, then you’re doing all of this because you’re looking to give him a better, lower risk life overall than to just ignore it. That’s a good thing.
The other thing I know is that my grandfather had regular nosebleeds and mental deficits through at least the 1940s (maybe the 1930s) and early 1950s. I don’t know if he had an AVM or not (but I think it’s very possible). The thing I encourage myself with in this regard is that it is soooo much better to be having to go through these things in the 2020s than it has ever been before. Your son is in the best hands with the best technology and understanding we have ever had about how to do this kind of thing.
Thanks @DickD. The technology really is crazy now, and my son has been fascinated by it all. In this way I’m fortunate he’s old enough to play an active role in the decision-making. While I’m mentally counting down the days that he has full range of vision, he reminds me his brain is still growing new cells and science is always advancing. When presented with all options, embolisation, gamma knife, resection, combination, etc., he made it very clear he wanted it out. Didn’t want to live the rest of his life wondering if his brain might explode at any minute. So then the choices were focused on making that removal as safe as possible.
I’ve become acutely aware through this group that, while it’s hard to feel like we’re ‘lucky’ in any way, our situation could be very much worse. Having the choice to remove hemorrhage-anxiety is a blessing, vs having an inoperable situation.
My husband and I have often wondered if AVMs are more common and maybe even more genetically linked than the studies now show. It was a completely unknown condition to all when we shared the news with our families, but since then there have been recollections shared like yours with your grandfather.
There is a genetic condition called HHT which brings (often multiple) AVMs as part of its baggage but I’ve read enough on here to be sure that there are at least some other familial links, occasionally.
And I think AVMs must be more common but it is the rate at which they are detected that we know about.