My story

My bleed happened on 7/21/05. I was having a verrryy bad day.LAte for work , flat tire, no cell phone, high heels, hot day. I can go on. but you get the picture. finally someone stopped to help me on the side of the freeway (guardian angel?) when i got back on the road i had a sudden , but brief, headache on the right side of my head. left as suddenly as it came.the pain was bad but not the worst pain of my life. i dont know maybe i have a high pain tolerance, moving on, i get to work, moved something to my trunk and came back to drivers side and collapsed, but didnt pass out. i tried to get up, not realizing that i could not move my left side. this was only about 5 minutes after my headache. i was able to yell for help. the security guard came and decided to call an ambulance. im still awake when they get there too. thats when the absolute worst thing happened. lying flat on my back on the gurney. i vomited with such force it shot straight up and landed all over me. Iwatched it go up and saw it coming right at me…ewwww!!! Thats the last thing I remember until i woke up 4 or 5 days later after the emergency craniotomy.Does my story help?I hope so. Good luck~~MELANIE


Yes, your story helps because it tells us all something important, we’re not alone. None of us wish this on anyone else but there is comfort in knowing someone else understands.

Is your AVM still active or has it been removed/embolized?

The emergency surgery fixed it all ,thankfully. thanks for your reply.another day to look forward to.~~MELANIE

Sounds like one hell of a day, Melanie! My whole ordeal with the beginning of my AVM-related problems was a VERY long, drawn-out ordeal. Between the first headache I associate with my AVM to the time I returned back to work after recovery from my craniotomy was about 5 years. I’d be curious to hear more about the stuff that has happened over the last 4 years.

Welcome to the site!

Hi jake it sounds like your bleed was more gradual than mine. I think the severity of mine was due to my stressful life at the time. Mine was so bad that the entire right side of my neck was purple due to the drained blood from my brain. That was soo shocking when I first saw myself in a mirror.It faded like a bruise. At the time of my bleed I was working for the state of CA. and i was in rhe rehab section of the hospital for over a month doing all kinds of therapies, talking to counselors etc to make sure Iwouldn’t kill my self or something. I got home and things were immediately bugging me.our family had come in and changed all kinds of things around and threw some stuff out that i had wanted to keep. . they meant well, but it had a negative emotional efect on me.i felt even more loss of control. (did i mention i used to be a control freak?) On top of that i had feelings of guilt about not being able to take care of my family and the house stuff. my girls were 12, 11 &7 at the time. my husband quit his job to train in his new responsibilities. which led to money problems and of course that snowballed. It took me over a year to get any state health coverage so i could continue ot & pt. But by then i had hit my leveling off time. so not much progress was made. in between then our dog Roxy died unexpectedly. which made me really mad at God. I sank into a depression for about 6 months with a lot of spontaneous drying fits. I took paxil for 6 months or so. and it helped. not taking it anymore since about a year ago though. I started to look for the good in a frustrating situation. I really miss my job and being independent the most. I have been venturing into loading clothes into the washer and then into the dryer. and i have mastered 1 handed 1 foot folding. i even clean the bathroom, with a little help from 1 of my girls. i would like to get my state job back when ca budget allows for my rehire, maybe next year. who knows? so that’s what I have been doing over the last 4 years. Is your experience similar?tell me what kind of obstacles you have encountered. I’m glad the people here are not too shy to reply to a stranger. God bless us all! ~~ MELANIE

I would like to know how was it after surgery. How long was your recovery? When were you able to go back to work or did you go etc… My surgery is Sept 1st. I just would like to know how it is after the surgery is over. I am so nervous & scared to death. I has a mild stroke the weekend of July 4th and that is when they found the AVM----I went to a few drs before I found one I was comfortable with but his schedule doesn’t allow it until Sept. He said I will be ok. Still having those what I called lightning bolt headaches that last for about 40 sec (a long time to me) then leaves. I am still at work but my last day will be August 27th — I may not even make it that long because I am too stress out. If anyone can tell me what to expect after the surgery it would be a big help. I understand that all situation are different I just want a general idea. You guys are the only ones I can talk to. Pls help.
God Bless…