To be rare…

Hello everyone,

I originally joined after I had stents placed in my left transverse and sigmoid sinus (veins in the brain) due to stenosis. The surgery was 10/19, over the last year or so my headaches have been getting worse and more frequent. I’ve also been having some other symptoms that my original diagnosis didn’t explain. I went in for a MRI and they found an AVM.

What is the probability of having two rare brain conditions? I wasn’t expecting a new diagnosis. I’m scared and not ready to go through all of this again. I think the worst part is most people have no idea what I go through or even care to understand. If anyone has any advice or knows what I can expect, I’d really appreciate it.


@Breezy Hello - well I think us rare people its kinda common for us to have rare things. I first had a rare stroke called CVST due to 5 blood clots in m y brain and went into a coma at 43 and was paralyzed and couldn’t talk . I had brain damage. Then about six months later developed my AVM - DAVF-
I also have Ehlers Danlos which they say is rare but I don’t think so.
When My Stanford Stroke Dr who is the head of the dept said you cant have another rare brain thing I said hello my name is Angela you are just getting to know me…in my family if something is rare we are going to have it…
my younger sister got the flesh eating virus and luckily lived and didn’t have an amputation and she was also at Stanford. If you are still in the Bay Area and want to get together let me know

1 Like

When I had my DAVF diagnosed and embolized back in 2017, the doc said he found a “diminution” of my right transverse sinus in exactly the place where the shunt was flowing in. So maybe there’s a firm connection rather than a coincidence.


Sorry to hear about your AVM diagnosis, but please stay strong cause you will get through this… it’s not ideal & it’s definitely scary but you need to take it on as best as possible… the technology today is far more advanced than 5-10 years ago & continues to improve daily… there’s a fight on your hands but there’s light at the end of the tunnel… please keep us posted on your journey… God bless!