Hey all!
It’s a holiday weekend in the UK — the last hurrah of summer! Some schools are back in session, others are off for maybe a week before the autumn term starts. I’m in Leicestershire and everyone is back at the grindstone again except for the holiday tomorrow.
A quick introduction… (if you’ve already read a couple of stories this week, you might find me on repeat!) I’m ‘Mr Richard’ as far as @Moltroub is concerned, I’m one of the members of the Modsupport team at Ben’s Friends and I have a different rare disease from most of you because I’ve got something called a brain arteriovenous malformation. Ben’s Friends operates this forum on behalf of the Brain Aneurysm Foundation of America, paid for and in the livery of BAF rather than our own livery. At Ben’s Friends, we currently have over a dozen different online support communities for people with different rare medical conditions and we’ve been looking after people in the way you see here since 2007.
I’ve been a moderator in our AVM community for just over 10 years.
About half of our brain AVM patients discover their AVM incidentally and about half after a bleed — very much the same as here — and honestly, we have very much the same worries as you guys. With an AVM, the high pressure blood is flowing directly into a low pressure vein, without there being a capillary bed in the way, so the pressure isn’t reduced, the vein can bag out in a similar way to a BA and with the same impacts when it is in your brain. We welcome people with almost any vascular malformation except brain aneurysms: I point the BA patients in this direction and @Moltroub points any other vascular malformation people in my direction. Hopefully, we look after everyone in the right way. I’d say that brain AVM patients are — on average — a bit more well than people here, probably because the bleeds are often a bit nearer the surface / easier to get to. In the same way as you, we also have embolizations sometimes or a craniotomy/surgical resection. We might use stereotactic radiotherapy where the AVM isn’t accessible and stents are not used: we are interested in closing the erroneous vessel. If the AVM is outside the brain, different operations may be performed, such as ‘sclerotherapy’ to scar the naughty vessels and cause them to close up, or if it is in one’s spine, a ‘laminectomy’ may be undertaken in some cases.
In the same way as with a brain aneurysm, sometimes going for proactive surgery to reduce the risk of a bleed isn’t a good idea and patients are advised to do the dreaded ‘watch and wait’. We are very much brothers and sisters to you!
I discovered my dural arteriovenous fistula in the back of my head back in 2015/16 and I managed to self-diagnose in April 2016 with the help of Dr Google and a webpage on the American Stroke Association website which exactly described my symptoms. I could hear a pulsatile tinnitus from the DAVF discharging into my right transverse sinus with such force that it was pumping rough blood past both ears, once a second, 24h a day. It is unusual for patients to be able to hear their AVM.
I was fortunate to be diagnosed correctly in August 2016 and get to the front of the surgery queue in April 2017. I avoided a bleed but it took me two further years to get back to being ‘ok’, as I’ve described in a couple of conversations here. The anticipation of a bleed is not a good thing, though I take my hat off to everyone who has discovered theirs post bleed.
It is very good to meet you.
So… to welcomes for this community this week! We have three new members.
@John2 is a former air force pilot and green energy worker in NY state. He had a rupture in 2024 with the all-familiar ‘worst headache ever’ and is still recovering, beset by lingering symptoms that he’s keen to shake off.
@MillieNYC19 is in NJ/NYC and has had a complicated journey with perhaps ischaemic and haemorrhagic strokes this spring. She and her husband have excitingly moved into their first home at about the same time! 
That’s a lot going on.
@Atira is a Canadian neighbour in Newfoundland and had her big headache last September. After a couple of months of being told “Its just a headache” she collapsed at work in December and was rushed into emergency surgery. Stacey is finding going from being a very independent woman to having to deal with being set back from good health to be as challenging as we all know it is.
Welcome one and all! I hope that you’ll find friends here who are going through the same as you or who have 90-something-percent got out the other side. It is great to have you on board. You are not alone.
Lots of love,
Richard
