John, My thoughts on pediactric AVM or Adult AVM are just what I can imagine it would be like as an adult to all of a sudden be more than half blind; that is really what I mostly think about. Since I became this way at 9, I really didn’t know much difference. My family said I could never ice skate again, but they let me ride my bike, so go figure. I remember being totally bald, and was made fun of. I remember being a teenager. in the 1960s, and feeling like an alien, very different. I still had fun, though, at times. When they did the craniotomy, it was with no scans, just an EEG to go by. He said it was called an exploratory craniotomy. They thought I had cancer, so took more brain cells than would now be necessary. But he found it, and I am grateful. Most kids died from an AVM bleed back then. I was able to get married, have a son, be a half blind paralegal for a state attorney general office. I depended on my husband a lot, and we even hiked a portion of the Appalachian trail. Unfortunately, he died when he was 47. Since then, I have learned to get along myself, with the help of a guide dog for the blind.And I am now a Grandma.
It can be done - live happily after an AVM. Sometimes it takes a lot of effort. Everything worth doing takes effort, though.
beans
I was 7 years old when it was discovered. 26 before they could do anything. I am now 49.
beans,
You have been through it, and not just for 4 or 5 years but for a near lifetime.
But you have lived a life and had a grand-child! I have one also and one more
I am told on the way for next year. They thought I might also become half blind
or more when they found mine because of the location, but other than some
double vision at first I was OK. My supervisor I had at work for 25 years was
also legally blind, but it made her memory very sharp and no one pulled the
wool over her eyes ever!
best to you, john
John
I would have double vision except my brain was immature at the time of the AVM. A doctor told me my brain decided to just use signals from the right eye, which means half the right eye. My brain mostly does not get messages from the left eye, otherwise I would have double vision. I am glad I do not. Was your AVM located in the back of your brain? Mine was in the right occipital.
If not for the brain surgery, and if I was legally blind for another reason, I may have not been a sucker or believe a lot of what I hear. Or be impulsive. Or forget that I can’t see like everyone. Or deny it. That is another one of the sideshows my brain acquired. There is a medical name for the memory problem I have about my vision. I am not sure, but it may be anastognosia? I will find it and let you know. It is interesting. Hope you don’t mind me writing.
beans
I was 44. Active and athletic, I was 'luckily' kicked in the head with a soccer ball playing co-ed soccer! Concussion symptoms sent me in for MRI and they discovered a 7 cm AVM in my right frontal lobe. Looking back I had recently had some bad headaches after intense activity (skiing, 1/2 marathon) that I put off as migraines but may have been symptoms. Had three embolization's followed by brain surgery and am fully AVM free today at 47!
My Son was 8 years old when his AVM hemorrhaged. We were told his AVM was inoperable. We found a couple of Dr.'s (one in NYC and one in AZ) who said they could remove it surgically. He had surgery in NYC 4 months after the hemorrhage. When he was 13 during an annual check they found the AVM had returned. He had another surgery, which we hope will be his last.
I was 19 yrs old when they first saw "something" in my mri and ct i did not discover that t was a CM until i was 22.. and soon i will be having surgury to remove it,,, i just turning 24
It was discovered with a scan when I was six. My mother, a doctor heard the bruit sound in my head (it was a very large AVM) After that it was monitored and first just my parents when I was 6 and 10, then all of us when I was 18 decided on whether to be treated. I didn’t have symptoms until I was 24. Even then they were headaches that I might have put down to something else if I didn’t already know about the AVM. There was no crisis, I decided to be treated when I was 25.
I had just turned 30.
Hi, I was 37 years old and 38 weeks pregnant when my midwife noticed my breathing was very heavy at my check up. Turned out I have AVM's on my lungs and one on my Brain. They delivered my baby by C section within days so that I didn't have to push. They thought it could burst the AVM's. Then when he was 2 months I had 7 coils put into my lungs then when he was 13 months they did Radiotherapy on the one on my brain. It has been 6 months and I'm feeling Ok. My only concern is my eyesight is getting worse and I have started to get migraines again.
Hi Millie. Thanks for sharing your story. I have a brain AVM and knew about it before having children. I desperately wanted a family though and doctors okay'ed it. But both my babies were delivered by C Section too for the same reasons as yours. They were concerned that pushing would put too much pressure on my AVM. I feel absolutely fine now and so lucky to have them. My eyesight is deteriorating gradually too and I have often wondered if this is related to my AVM. Apparently I am very long-sighted and am wearing glasses more and more often. But weirdly I never got headaches caused by eye strain and my optician was really surprised about that. Just a thought but could your migraines be caused by eye-strain? Are you suffering from tiredness too (this was the main symptom for me)? All the best x
43.Out of the blue. No warning.
Hi Lulu, Thanks for your reply, My doctors have told me I am not allowed to have any more children. I only have the one and that's Ok with me. He was IVF so we are lucky to have him! I have been putting off getting my eyes checked so yes my migraines could be connected. I get tired but I'm not sure if that is from working full time and having a 20 month old or it's connected to my AVM's. All the best to you too x
Hi Millie. Thanks for responding. I have been advised not to have any more children now too. Which is fine as we only ever planned to have two. Like you I am grateful every day that we had the opportunity. With my eldest it took ages to get pregnant and we thought we were going to have to go down the IVF route too. But at the last minute (and after taking Clomid for a while) I found I was pregnant. Second time was much easier. My advice would definitely be to get an eye test before you worry too much. I too work full-time. And with young children as well (mine are now 10 and 6) life can be really busy as you will know. I put my tiredness down to this for quite a while. But it was getting worse to the point where I would need to take a nap in my lunch break. When I went for an eye test I was told I needed much stronger glasses and that my tiredness was down to eye strain. Hope you get it sorted out. x
The average and median age of discovery is about 29 years old.
I would get sick--violently ill--every few weeks, since the time I was born. I was often hospitalized for it, due to dehydration. The cause for my taking ill so frequently, and the subsequent 'cycle vomiting' was never looked into. When I was 9 years of age, I complained of a headache, let out a loud scream, and passed out on the floor. At the hospital, that I was then rushed to, tests were done, and that was when my avm (which had ruptured) was discovered.
I was 55 years Young :)
I was (am) 34. Approximately 3 weeks after my birthday. I had never heard of an AVM before, neither had my parents. I had been having headaches which I assumed were allergies.
I didn't know at first that I was having seizures since mine aren't the kind you can see. I would feel like there were "earthquakes" when I was in the shower and passed out twice one morning. I now think those were both seizures.
60
Reading all of these replies is incredible! I was/am 30 years old. I have had CT scans for headaches before this, so I always knew something was wrong. Crazy to think I'm just over the average age.