I was 20 when I had my first seizure, but the neurologists didn't diagnose it correctly until I was about 24.
I had just turned 10 back in 2000. My AVM ruptured. Good health now but a heck of ride.
8 months ago had an AVM bleed , 30 yrs old
Just shy of 2 months ago, 48 years old. No symptoms prior to the bleed, now currently in the testing and determining which treatment is best based on my condition.
Wow! Crazy to read about all the different ages and totally surprised at all of the 50 year olds!! I too, was 57 and no signs at all until a bleed, which they still don't know if it came from the AVM or the aneurysm that was created from the AVM.
18. All sorts of scary symptoms started popping gradually happening within the span of a year so they did an MRI and it was detected. Scary stuff.
Hi there, I was 6 or 7 years old when the Doctor’s detected my AVM. Now I’m 26 and living a life.
hi
can i ask you what treatment your parents chosen for you?
my son is almost 5 years old, and we have received various doctors proposals.
did you change your daily life?
thanks
Hi Elena,
Thank you for reaching out. My AVM was discovered in 1997. After a series
of embolisation and the special type of glue added to my blood vessels made
me Live pass 16. Over the next few years I had to get gamma knife radiation
surgery done to me. I hope that helped. I would say listen to your doctors
and find somebody who actually cares about your son. I know a lot of
neurologist now look after the money but the fact of the matter is that you
need somebody who really knows your son and knows your family as a whole.
Knows how special he is and the wonderful things he will accomplish
throughout his life. I again hope that helps.
I was 17 for my first one and 18 for my second. Had a severe headache 2 days after Christmas in 1988.
My first one ruptured and had surgery to repair. The follow up MRI/ Scan revealed one deeper and bigger in my Brian.
Another surgery in March of 1989. I spent my 18th Birthday in the hospital. I notice when I get really tired, I lose my balance, stumble. I have had 2 beautiful girls, both natural birth. I never want another headache like that .
I was 13 years old.
So many different specialists put me in the to hard basket before a diagnosis was made quite a few years later.
Finally thought I was AVM free after 3 years, just recently had 6 AVMs removed and going back in again soon…
Hi everyone. I was 39. I was running on a treadmill down in my local gym and my AVM ruptured. 1 month in coma. Massive stroke. No signs or symptoms. Had cyberknife. Had MRI 6 months ago and radiation seems to be working. Have to go for angiogram next year to make sure its obliterated. Arm is back 95%, starting to move toes only now.
Best of luck to everyone.
They found mine in 1989, I was 32. I found some mention here of those super headaches with throwing up and blacking out. I’d had those since sometime back in the sixties. I’d also had two seizures, 1986 and 1988. The crainiotomy and gamma knife in 1989 have worked pretty good. Except for hidden problems like no memory, I’m doing well. Next year, I turn 60. Never thought I’d make it this far.
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I was 11. No warning AT ALL. I did hit my head on the jungle gym a few days earlier. Nothing too bad, but I’ve always wondered if that triggered something off?
Diagnosed three days before my 14th birthday. Very traumatic experience. I admire the courage of everyone who has posted their avm experience, it is very helpful to read about the positive experiences people are having as well as helping each other through the challenges we are facing.
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Was 12, bled a little after small car accident. Resurfaced at 34.
Did you have a rupture? My daughter just suffered a rupture. She’s 10 and is still in ICU. How have you recovered?
My daughter’s ruptured 14 days ago. No warning signs. She’s 10. Still unconscious most of the time. Where was yours and how have you recovered? Hers was on the cerebellum and most swelling was on the brain stem. I hope you’re doing very well. This is the scariest thing I’ve ever faced.
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So did your AVM ever rupture or is the paralysis a side effect of being operated on? My 10 yr old daughter just had a rupture 14 days ago. She had no previous symptoms. It was on her cerebellum but the worst swelling was on the brain stem. Needless to say we’re thrilled she survived the bleed and surgery but we’re also very scared about what the future holds.
I was 65 years old when I had surgery. Had suffered symptoms for 5 years before a
bleed at my 65th birthday.
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