Length of time between bleeds

I’ve been reading the big survey thread for when people discovered their AVMs and have noticed quite a few people lived with them untreated for many years between bleeds or obliteration. I have just completed Stereotactic Radiosurgery so am still not in the safe zone.

Even though I know it’s random, I find it comforting to hear that people could live with them so long without a bleed. So I guess this is my own little survey: how long have you knowingly lived with your AVM without it rupturing? (total time before second rupture or obliteration.)

I’m 35, had three babies, AVM is congenital and I have never had a bleed. Treated by gamma in June. Kinda hoping that I’ve pasted the test and will remain unruptured until obliteration.

I will be 33 soon and was told I had my AVM since birth…I found out about it in 2006 and was told due to size/location to just be monitored-so far so good on no bleed! I am hoping within the next year though to try to see if I can find treatment options to get it removed-I worry too much I’ll have a problem with it!

Hi, my son Ethan had stereotactic radio-surgery in October last year, I know there’s a lot of risks and side effects however my son has been absolutely fine. The only thing I would say is he gets a bit fed up every now and again and often gets emotional. I’d say keep yourself busy so you don’t get chance to get down. Ethan was 6 when he first had a bleed and he is nearly 10. Don’t know if that helps. xxx

Back in 2006, the doctors told me that I had this AVM since birth. Before the AVM was discovered I had a baby vaginally (I know C section is very common now), I weight trained about 5 times a week, pushed myself playing soccer and was very physically active. Not sure how it never ruptured but it didn’t. I had it removed surigically in 2006 but they said it was next to my brain stem and if it ever ruptured I would probably stop breathing immediately. (Ah the drama). Basically they didn’t know what would happen if it was left alone saying it could rupture immediately or when I was much older. Having a daughter in HS at the time, I didn’t want the rupture to ever happen so I had the surgery. But good question. Thanks for asking.

Hello. I am 40 and was diagnosed when I was 28, was born with my avm in my spinal cord. Looking back, I had a bleed when I was a junior in high school, but no one knew what had happened. I ended up having panic attacks thinking the pain would return… kept on with my life though and went to college, career etc. Then had another bleed at the age of 28 and after six months of different diagnosis, learned that I had the avm. At that point I had mild neurological defects… weak legs, no sensation of hot or cold below the chest/ worse in the legs and overreactive reflexes. I got married at 30 and we adopted two beautiful children. I believe I have had a couple of small bleeds since the one when I was 28. I experience a burning sensation in my chest. Doctors agree that the best thing I can do is live with it as I am still walking and functioning as though nothing is wrong. To try and treat due to location would put me at too much risk for paralysis or at least more deficits than I have at this point.

Each day is a GIFT. So that is how I try and live my life. Oh, I do have to remind myself some days. It is a little anxiety producing knowing that at any time I could have a catastrophic bleed, but no one knows what each day may bring anyway. Each AVM situation is different too. God Bless. Hope this info was helpful!
Kari

52 years. Haven’t bled yet.
Libby