It’s been a while since I last posted. Well, in AVM-related news, I had another MRI (my 3rd actually) last Thursday to track what exactly is going on with my brain, and if the AVM has been obliterated once and for all. Of course, I’m hoping for the best, and that my malformation was fixed by the numerous medical procedures done to obliterate it.

MRIs scare me a lot. I’m not even claustrophobic. I dread going to North Shore University Hospital because I know that as soon as I come into that room and inserted into the machine-tube, laying down as still as possible, these loud and startling noises and sounds will come at me randomly, one different from the next–as soon as one particular sound resonates throughout the tube I’m in, another one is bound to start. This process would last fifteen minutes or so, but inside it seems like an hour. The person supervising takes me out of the machine only to draw my blood, for contrast. That’s the part I hate, and two days ago especially- taking contrast was really bloody because it took him a while to find my vein.

I have this title because…what can I possibly do, what needs to be done to increase AVM awareness worldwide, or at least nationwide? I don’t want anybody to go through what I have; to be healthy and happy one day and hemiplegic the next due to AVM. Yes, it’s quite rare-- but that doesn’t mean we here should not let other people know about them. How can we all find a way to prevent it from occurring when we are not given any funds? Why don’t they have any PSAs or organizations besides this one in support of AVM awareness? WE SHOULD DO SOMETHING ABOUT THIS.

I couldn’t agree with you more Jill! Patients and their families living with and coping w/vascular malformations do need more awareness, more research, etc.
After having 4 bleeds within the past 23 years requiring surgery have set me ‘on fire’ to bring more awareness and I have written my heart out to politicians, our President, newspapers, medical associations, etc. with few responses, yet I am determined to be heard.
A few suggestions would be:,,, but don’t stop there, it’s only a start. :slight_smile:

More suggestions of websites to share your story and bring more awareness are @,,
Happy writing & creating,