Hello everyone, just sharing my story here. I’ll continue posting updates whenever I reach a milestone.
I’m 27, about a month ago, after getting a brain MRI to check what is causing my aura migraines, the radiologist and doctor incidentally found a small (1x1cm) in my left occipital. It’s not superficial, and it’s quite deep. However, I’m thankful that its not SUPER deep and its somewhat accessible. I spoke to my neurosurgeon yesterday, and I will be doing the DSA angiogram soon to determine the best course of treatment for me. I feel fine, it’s never ruptured before, and I feel like I’m in good hands. The neurosurgeon seems competent. He said we won’t be doing any embolization because it might cause more harm than good, considering the size of my AVM. Doc also mentioned he can only see one artery feeding blood into the AVM, as far as he can tell from the MRI.
In any case, I’m being as optimistic as possible, and once my AVM is gone, I’ll go for runs as much as I can because this AVM is stopping me from doing it right now, for fear of it hemorrhaging.
LMK if any of you guys have a similar AVM as mine!
Welcome! Sounds like you are in a good positon in having your AVM discovered and exploring options. Confidence in your neuro is a great comfort for sure! My AVM was discovered due to a bleed, and was in the left temporal, on the inner side of the lobe. It was a similar size to yours, and I was presented with two options, craniotomy and Gamma Knife. I was not a candidate for embolization either.
My team was very deliberate and did a second angio prior to decision. The first was when I was in the ER. The discussed it as a team and we determined GK was the best option for me. It presented the least risk of deficit, but always the worry of a second bleed. I had the procedure in November of 2016, and in February 2019 was confirmed obliterated by hopefully my last ever angio!
Hopefully we are able to provide our experiences as your journey continues. Take Care, John.
I had an AVM on my right occipital which ruptured in Oct ‘24, costing me 25% of my vision. I needed an emergency craniotomy, and the post-surgery angiogram found a second AVM on my left occipital which was treated by Gamma Knife last year.
Unbeknownst to me I’d been carrying my AVMs around for thirty years and for over ten of those I’d been doing frequent long-course triathlons, mountain biking trips, climbs in the high Alps, weight training etc with absolutely no issues. Instead, mine ruptured in the shower one quiet morning at home.
Over the course of my treatment I was fortunate to meet with two excellent neuro consultants at two different hospitals and they both said they’d heard similiar things from many patients- they suggested that there didn’t seem to be any real correlation between heart rate/activity level and the risk of haemorrhage in a given moment.
The best advice they gave me was to just live my life as I wanted to- if it’s going to happen it will happen, if it isn’t it won’t. There wasn’t really anything I could do to meaningfully affect the outcome. If anything, one of the doctors said my relatively low blood pressure (which I attribute to years of cardiovascular training) might even have limited the extent of the damage and vision loss when my first one ruptured.
So- while I still have my second AVM and I am still waiting for the radiation to take effect, I still feel safe and comfortable to exercise at least as much as my other post-haemorrhage health concerns allow. The fear and memories of trauma are still there, but I have learned to make my peace with them. It doesn’t have to stop you enjoying your life!
I recommend speaking with your medical team on guidance on what you can/can’t do in the interim… prior to my AVM diagnosis I played a lot of physical sports, weight lifting & did both martial arts & boxing for years - AVM was found at age 31 on a general check up… when I looked back on the things I’ve done, all of these activities could of easily resulted in a bleed, but never did… I completely understand your concerns, but it’s important to live life & not let this impact you unless really necessary - everything in moderation… keep us posted on your journey… God bless!
Hello! I am back with an update. I went for my cerebral angiogram and the neuro told me that it’s a grade 2 avm.
I did NOT expect the contrast to hurt that bad. When they injected the contrast, it was easily the worst pain I’ve felt in my entire life. And they didnt warn me that there would be multiple contrasts injected in one angio session. Safe to say I’ll never ever go for another angio again. I’ll do MRI at most.
I’ll see the neurosurgeon again soon to discuss my options moving forward.
It might be that you’re allergic to the contrast material. I’d talk to the doc about that when you need a future scan: they will use a different contrast material which you might get on better with.
The usual reaction to contrast material is that it has different effects when they inject it in vessels that serve different parts of the brain, so my interventional radiologist told me, “hot flush” or “probably see stars” or “might feel nausea” as it was injected in different places (and he was right: that was what happened). It’s unusual for it to hurt.
An angiogram is a very useful, perhaps important tool, so finding a way to get you through it better rather than shying away from it completely will be good.
Great update: hopefully we can help you through a bit as you go through future stages.
