Do you tell people about your condition?

Thanks Claire.

I hope you're right. So far my closest friends have reacted really poorly so that was a shock. I wonder if I'll meet new friends who can handle it better or something unusual will come about because of it.

I'm glad that you have a supportive network and wish you well!
Take care,

Thanks for sharing your experiences, Caroline. That's quite a lot of procedures you've had! I hope you are feeling ok today. I'm glad to hear that you're getting your AVM removed and I wish you a speedy --but gentle--recovery.

Thank you for your advice as well. We'll see. I'm not sure how much it helps to tell people who freak out but maybe. Maybe I can educate people. I don't know. I'm trying to keep my stress down :)

Well wishes to you Caroline as you take the next step!

Thanks SuperJenLynn,

I am going to a neurosurgeon in 2 weeks and I'll know more after that.
Thanks for your messages.

I hope your doing well. These medicines can really be a beast, glad you are taking care of yourself. And, laughing out loud is great medicine too!

Well wishes,


i'm always here if you need to talk about this

I've told those I think need to know. Then I got a medical alert pendant for those who don't and all strangers in case I need help and can't speak for myself. My neurologist suggested it and I had already done it!

I've told some people. I was shocked to find it did nt matter to those I thought would matter to most, like my mother, my sister, my closest relatives and friends. But thankfully I have the support of my husband and children, my mother-in-law and a few close friends. I recently just found this forum and I'm so happy to know I am not alone, especially knowing now I'm not alone when the doctors seem to have pushed me aside too. I like the idea of the medical alert necklace. I'm considering this until I know my avm has been obliterated. Thanks for that info.

Hi my name is Trevor I am 30 years old and i too have a AVM in the brain. I am sorry to here that your friends and family show no concern to your condition, but i do know what you are going through I dont know if the problem is actual memory loss or just frustrated from the constant headaches, but i too have noticed not per-say memory loss but things like walking away from the urinal before i have finished, walking to the car and then realizing the keyes are in the house or even leaving and coming home to the door being wide open. The funny thing is before it was an out of the ordinary thing, now its more frequent and my family says I've always had those problems but i think forgetting where my hat is is totally diferent from pissing all over the gas station bathroom. Looking at me I am normal I have a job that is 30 some miles away cutting trees that have fallen over due to the winds. My doctor does not like the fact that I am operating a chain saw and walking trees but in this economy I need to take what is their, before i was a framer but due to never knowing when the headaches come he laid me off. Any who i will be going into surgery on the fourth of may and will be looking for different work shortly after. If you have any questions, or just need someone who knows what you are going through you can e-mail me at ■■■■■■■■■■■■■■■ our friend me on facebook which is actually in my wifes name Sonjya McCallister, hope to keep in contact

I had chosen to only tell "select" people. Some family and I told my immediate supervisor due to feeling he needed to know what I was dealing with. Aside from that I planned to keep quiet about it. However while I was in the hospital my immediate supervisor sent out an email telling everyone at work! I am furious!!! I also know that I could file a lawsuit but because I do like my supervisor so much I probably won't. I could not believe he did this!!! And yes, I've gotten all kinds of reactions from good to bad!

Oh no! That should not have been up to him to choose to do. I am so sorry your supervisor did that to you :(

Ya, that's a great idea Karen.
Thanks for sharing it with us!


Sorry to hear that people close to you didn't understand or seem to care. It sucks, that's sort of what happened to me too. I'm just focusing on life and not telling people now and that's working out pretty good. I hope you're getting what you need, sounds like you've got some good folks that are close to you.
Take care,

Thanks Trevor (Sonjya),

Ya, I have memory problems, headaches, and this week I'm super dizzy all the time<---which better go away because that's just way too many symptoms for one girl to have!

It is kind of messing things up for me at work and, well, I don't know if it's better to explain to people or let them think I'm a flake or what to do. I just don't really know. As I said, the people I told at first were not very cool about it so I've held off on telling more people.

Anyways, I'm happy for you to be going into surgery, though it is a big deal! Wow. I wonder how you feel about it? I know a girl who got it and it went perfectly. She feels that she didn't lose any function and it only really took her about 8 weeks to get back to 100%.

I wish you all the luck!
I hope it all goes just perfectly!
Thanks for reaching out....Well wishes!!!

Hi Ngawildlower,

Thanks for sharing your story...though I'm sorry that happened to you!
That's really terrible and you're right, it probably is illegal--it's definitely not very considerate!

I hope you are feeling at peace with what happened now, I suppose there's no taking it back once people know.
That's why I'm not telling people because I tried to tell a couple of people and they weren't very cool about it so no use telling more.

I hope you're feeling better after your hospital stay...
Well wishes to you!

Hi Gaahla, I’m only 17 and made the mistake of telling my friends who to say the least didn’t understand one bit and didn’t understand the side effects either. A week before I went in for gamma knife I told them all they weren’t being supportive enough (probably the wrong thing to do but I was emotional) and they haven’t spoken to me since. I wish I’d of kept it just to my family who can’t go anywhere no matter how horrible I’m feeling. Ive found that people on here are way more supportive than anyone I know, hope you find the support you need through here :slight_smile: x

I never told people about it. I didn't want sympathy or to be viewed as ill. My Mom talked about it and I had to leave school before the semester ended, so most people found out. I told the succinct truth when asked, but I didn't bring it up. I didn't want to be "the kid with the weird type of brain tumor."

I did put in my facebook quotes section, however, "Alright brain, I don't like you and you don't like me. Now let's get this over so I can go back to killing you with beer! -Home Simpson"

Now I've got a large scar, and standard male pattern baldness has left me with a Mr. Clean. I get questions almost daily about the scar. At least in part out of boredom (how often can you tell the same story?), I always make a game out of it. "Bit my a shark." "Motorcycle accident." "Hit over the head with a wine bottle. Then I picked up the broken wine bottle and killed the other guy (extra badass story)." I also like to say, with a dead serious delivery, "skydiving accident" and then walk away quickly. Or how about, "lawnmower." That drops some jaws!

After even an obvious fib, most people either drop it or believe it. If I really get pinned, a couple lines usually put the issue to bed. "I don't remember" or "It's a medical scar" or "I'll tell you about it tomorrow."

yada yada. I don't know if that's any help. That's just my experience. I didn't talk about being sick or about the scar because I don't want sympathy and I don't want anyone to think, "weird...contagious?"

Hey Charl,

Sorry to hear that people were so uncool. I'm kind of shocked that people aren't more cool and supportive about this sort of thing. It's not contagious, it's congenital, what's not to by sympathetic about? Jeez. What is wrong with people?

I don't know what I was expecting, a hug? Maybe, "I got your back, kid" something like that I guess. I guess not. Oh well. Maybe that you can't see it is part of the reason why? I don't know know.

Well, I'm glad you can turn to your family. That's great. I love how you said they can't go anywhere! haha. right!

Keep on keepin on.

Cap 263,

I love it! Brilliant! I'm totally going to make up something cool!
Everyone I told I said I needed a brain transplant but they didn't laugh. Hmm. Must be too close to the truth.

Alien-removal? I dunno. I'm going to work on it!!! Thanks for the inspiration!

"Alright brain, I don't like you and you don't like me. Now let's get this over so I can go back to killing you with beer! -Homer Simpson" awesome.

haha. what? what do you mean? do you mean you think it's weird to tell people? that it's wrong somehow? is that what you're saying? it's better to keep it to yourself, you're so tuff Boston Celtics!

Thanks Gaahla! Best wishes to you!