What information would you like poeple to know about AVMs and your experience?


Let me chime in here... All AVM journeys are different (ruptured, unruptured, active, obliterated) and have a multitude of different possible outcomes (divorce, getting closer, identifying friends and mere acquaintances better, etc.). But one thing in my experience as a moderator here is that a person's attitude and outlook about their own circumstance determines one's outcome. Specifically, it is very human to be initially scared, depressed, anxious when first diagnosed because it is an unknown variable. However, despite you being an introvert or an extrovert, one can always gather more information (specific to their situation, not others) and try like heck to keep a positive and strong attitude despite it all.

Their is much grieving over loss and the unknown (and that is to be expected), but that can improve with time. I have seen it over and over again. But the main variable is the attitude of the person going on the journey.

I wish I knew that when I was going into it. By the way, I love your pic sticking your tongue out. It says a lot. Wishing the best for you and thank you so much for doing this. AVM awareness is a huge, potentially painful, but very rewarding task. Best of luck!


Nice, Suzy. Positive attitude is huge, you’re right.
Catherine, I applaud your effort. I’ve plowed through the Internet, books and medical journals in the year and a half since my AVM introduced itself via a stroke. One of the things that isn’t covered nearly enough (in my humble opinion) is “flooding.” You can watch a video about it here. http://www.avmsurvivors.org/video/flooding-becoming-overwhelmed-after-brain-injury
It’s something that both survivors and caregivers and loved ones would benefit from.
I’d also like to share with you with a “letter from your brain”. I used it on numerous occasions to remind myself and my loved ones what I was going through. Many thanks go to Louisa, who shared this with me and many others on this site - http://waiting.com/letter.html
Catherine, you can do it. I can tell from the twinkle in your eye and your tongue sticking out. Henry Ford once said, “Whether you think you can, or you think you can’t - you’re right.” All the best!!

Suzy I love that positive attitude! You're so right. Ultimately we decide how we deal with this in the end. And Tim, the flooding is the thing I was going to suggest, so thanks! For me, flooding is one of the most difficult things to explain to anyone.

Catherine...Three wonderful people, Suzy, Tim and Trish gave you the best advise...The only advise I have is please Stay Strong and Positive.

That is such a great idea Catherine. The one subject I might add about educating people on AVMS, is that they are NOT always in the brain. I am an extremity survivor myself (AVM of the tongue)and there is such a lack of education about where an AVM can occur.Yes, it is much more prevalent in the brain, but it can also be almost anywhere besides the brain. Please show us your final project, and especially your beautiful art work.

Yes, excdellent point Debra, thank you!

Hello everyone, This is a wonderful post. The wisdom spoke here is incredible, there is " NO " medical text book, that could compare to our words of experience. A few people responding, * * *

and look, at the quality of your words spoken here. We really are the experts ! I only say this because, I looked up the meaning of..... Expert, it says.. . . .

Having or showing special skill - or knowledge because of what you have been taught ( or )

We are all experts. Yeah for us, A deserving title , if I may say so myself. " Flooding " That video was made in the Province of British Columbia, Canada, where I lived at the time of my rupture. Not in the north, but in Vancouver. Anyways, last year after it was posted and the awesome activity around it, compelled me to write to the Northern brain injury association to tell them how wonderful it was perceived by so many people. I thanked them for having it out for the public to see. Thank you - Dancermom.

The contact person for that site ,then forwarded my note of thanks, to the man who spearheaded the making of it,... he was thrilled beyond words, it had gone further than he ever expected

Simply amazing - I get shivers up my back when I see networking done with such grace. Thank you all , for being here, for me to see progress at it's best.


Hey Catherine, I hope this helps and I think you are very brave for thinking of this…I suppose for me is that I look normal but the internal struggle that I have with headaches and tiredness is very hard to explain to people. Words like fatigue and lethargic don’t come close to what I’m feeling and the headaches are a nuisance and a worry as well as painful. Everyone I know has been amazing but I still don’t think they fully understand what I am goin through and how scary it is to have this thing inside you that you dont know what it is doing. Ticking time bomb comes to mind. If you need anymore comments I’m quite in need of a vent so let me no. Tilly.xx

'ticking time bomb' is a phase I've often used myself. Please vent away as I'd love more input on how you feel, plus a good vent is healthy :)

Thank you everyone for your input and encouragement. It's much appreciated and I'm taking all these notes into consideration.

Thank you :)

All AVM journeys are very different, absolutely. I'm just trying to do my best to put concise information together that speaks for a large percentage of the community. It's hard to express feelings through words alone which is why I'm trying to gather as much info so my wording can be more precise.

Thank you very much for your support and the information you've given me is really helpful. I'd never heard of flooding myself so it was good to learn about it. Do you know if flooding is like an event eg. like having a seizure -- it last for x amount of minutes, or is it something that happens on a daily basis, where those symptoms are now part of daily life?

I agree that staying strong and positive is great and I will definitely add that yet in my opinion, I also think it's okay to feel whatever you are feeling, whether you feel strong or weak, or whether you are positive or you feel like you are going through a crappy situation and you want to be angry for a while. I don't think any reaction is wrong, if that makes sense.

Thank you for the info and if I do it, I will definitely show you :)

For me, I healed from my massive brain hemorrhage by staying strong & positive. Not all people, but for me, I know it was the best way to heal.

That's fantastic and I'm glad you were able to heal in a positive way :) It's definitely the ideal path.

I think it’s different for each person. I don’t have it as severely as the video indicated. It’s just much more difficult to tune out background noise, and focusing on the task at hand. On a scale of one to ten I have a two or three. The video indicates a seven or eight, and unfortunately some people probably suffer a ten. I don’t experience it on a daily basis, but I lead a much quieter life now since I’ve had a stroke. All I can say for certain is it’s difficult to explain if you’ve never had it, but it’s fairly common for AVMers.
I wouldn’t say it’s like a seizure, although the only type of seizure I’ve had is a tonic-clonic (Gran Mal), and only one. It was a doozy, though. Lights out!
I hope I helped, but feel free to ask more questions if necessary. All the best!

Hi Catherine. I think this is a really commendable project and wish you the best of luck with it. Personally I am happy to talk about my medical condition with anyone that shows an interest. But sadly my experience is that people are either shocked into silence or don't want to know about it at all. I do find this quite irritating. But unfortunately as soon as you mention the word 'brain' people seem to think you have a brain tumour. A friend of mine has this idea in her head and no matter what I say her view doesn't seem to shift. It would help so much if more people had just heard of AVM and understood what they were and that there are plenty of us survivors. I think it would be great to tell others the facts in real layman's terms. Although everyone is different perhaps it could also include common side-effects.

I think, as many have mentioned, it's a very personal thing based upon symptoms, AVM location, interpersonal responses of family and friends. Perhaps I should have said "many variables"?
It's a start though. A start on overwhelming task. Overwhelming as it is, required also. It builds community.
Good luck to you!