Its been awhile since posting…but I have a question. My father paswed away in February due to an aneurysm that burst that was near his heart…so he basically bled to death. He was young 69.But I was wondering if my AVM and his aneurysm is related due to some or other generic vascular syndrome.
Granny (his mom) passed at 55 and also use to suffer from severe headaches … So is it possible that this runs in our bloodline? I was diagnosed by accident with my AVM back in 2018, received radiation and caused some damage. Luckily I dont have kids but could it affect my brother or sister ot their kids.
This has been bothering me since his passing as he knew about it and if my siblings need to get tested.
Firstly, I’m really sorry this is causing you so much anxiety. Dealing with a health crisis is one thing, but the mental anguish that comes with it, and which can often linger long after the physical symptoms have settled, is incredibly hard. My thoughts are with you.
With respect to the hereditary side of things, it’s worth remembering that an aneurysm and an AVM are two different types of vascular abnormality, so having a family member with an aneurysm doesn’t necessarily mean that your AVM was inherited.
Most brain AVMs occur sporadically rather than being passed down through families. One of the main recognised inherited conditions associated with AVMs is hereditary haemorrhagic telangiectasia (HHT), which is a genetic disorder that can cause abnormal blood vessel connections in different parts of the body, including the brain, lungs and liver. There is genetic testing for HHT, particularly if there are other signs or a suggestive family history, such as frequent unexplained nosebleeds or multiple AVMs.
If the hereditary aspect is something that’s causing you significant anxiety, it might be worth discussing HHT with your neurosurgical team or GP and asking whether they think a genetics referral or testing is appropriate in your particular case. But an isolated brain AVM by itself generally doesn’t mean that your children or other family members are destined to develop one. Matt
We have a separate forum for brain aneurysm patients at BAFsupport.org where I also help with moderating. It is specific to brain aneurysms, whereas this AVM forum is open to petty much any other vascular anomaly.
I think it is fair to say that there is a familial link with aneurysms: not so directly but if you have a family member with an aneurysm, your own risk is slightly elevated.
My dad had a abdominal aortal aneurysm go pop back in 2019. He was 79 at the time. He is still around and is in better health overall than my mum. I’d credit two things to him still being with us:
In his brother’s words, he’s a tough cookie.
He lives literally across the road from the hospital.
At the time of the bleed, he had a Do Not Resuscitate instruction in place but his wife told the ambulance crew, “I don’t care: I don’t want to lose him!” So they took him across the road and put him back together. It took the wind out of his sails but overall, he’s in better health than my mum.
In the same way that we worry about AVMs but find that these things are often survivable, so are aneurysms.
If you need the company of brain aneurysm survivors in the same way as AVM survivors, head over to BAFsupport. They are a great bunch.
I’ve often wondered the same thing but believe from reading over the years they are different and not hereditary… sorry to hear about your dad… God bless!