How do you know if an AVM of the body ruptures/bleeds?

My doctor’s have told me that my AVM spontaneously rupturing or bleeding isn’t very likely but if it were to happen, how would I even know? And If that happens,can they do anything to fix it?

So, I’m sure I’ve read of a recent gastrointestinal AVM patient @LynnM here (and I think I’ve also looked this up too) but in some places (e.g. if your AVM were to bleed into your gastrointestinal tract) you might not get any pain but you might find yourself getting very anaemic from the blood loss. If it isn’t possible to operate, then addressing the loss of iron is the mainstay.

If your AVM leaks into your uterus or bowel, you’ll probably get blood coming away that you’d notice and depending on where it bleeds, I guess you could have pain. My dad managed to have an abdominal aortal aneurysm go pop in 2019 and he was in severe pain from the (lots of) blood spilling into places it doesn’t belong. Quite remarkably, even though it was a massive aortal rupture and he was about 80 years old, he survived and is kinda well but it did very much take the wind out of his sails.

He does live literally across the road from the main district hospital, so we are all sure that that played a role as well.

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I’m so sorry he had to go through that but I’m very glad he survived! That’s so scary. I’m so scared of having an emergency bleed/situation with my AVM and going to a doctor that doesn’t know what to do and will probably make it worse. I’ve said on here before but there is only one hospital in my entire state that treats AVMs and they are almost 4 hours away from me.

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The doctors very much took the view that although they had operated, his 80-year-old organs had all been without oxygenated blood flow for some time and they were unsure that he would make it. I rang my cousin to prepare his dad for the idea that his brother was dangerously ill but fortunately he made near enough a full recovery. My uncle said “He’s a tough old b*****” and to be honest he’s right.

My dad lives abroad and with him being ill back in 2019 and then the coronavirus restrictions, I haven’t seen him since. I tried to catch a plane to visit over Easter but my wife was then ill, so I’m hoping to see him next month for the first time since 2018.

I know how you feel about being vulnerable. What I did when I had my untreated DAVF was to have a medical wristband made with my key details (including hospital id and my wife’s phone no) so that if I needed urgent care, I’d stand the best chance. I also put the details in the health/emergency section of my mobile phone. It is small steps like this that can help you relax a bit, and that’s what is important.

And there are good examples (e.g. my dad and people on this community) who get into trouble and come out the other side. Honestly, life is full of danger. You had a house fire: that proves it somewhat: there is nothing that we do day-to-day that is completely risk-free. Driving the car or crossing the road is probably the most dangerous thing we do every day but it doesn’t stop us. There are mitigations we do – drive carefully, look both ways when crossing etc – to reduce the risk and I see having medical details to hand as like looking both ways as you cross the road.

For US residents, you can also sign up to Backpack to keep your medical records in one place. I can look out the offer for that (if it still works).


Life is for living.


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Here’s the Backpack link…

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Well I hope you get to see him again soon :slight_smile: best wishes

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I’m currently planning 14th May :crossed_fingers:t3:

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Thank you very much for showing me this I’ve been spending the past 30 minutes or so uploading everything I can to this and it has given me a lot of piece of mind :pray:

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