For 49 years, I lived with an AVM and had no idea. I had never heard of an AVM. This past April 22nd, I woke up feeling great and proceeded with my day as usual. About 3:30pm, it felt like someone stabbed me in the head with a knife. I collapsed and the next thing I knew, I was about to be released from the hospital on May 5th. I have no memory of the time in between - the ambulance, the surgery, etc. My husband told me that I had an AVM, so of course I researched it. That's how I found this site.
Coming home after coming so close to death was surreal. In the hospital, the doctors told my husband to call my family to say their goodbyes, that "this was as bad as it gets". I was very close to death as I also had 2 anneurysms and a collapsed lung. My blood pressure dropped to seriously low levels and they weren't sure if I would ever lead a "normal" life. It is difficult to deal with, especially with no warning. And to have to be fed, bathed, dressed...I went from completely (and stubbornly) independent, to completely dependent. I'm much better now, but a lot of that progress has been because of my attitude, and this site has helped my attitude tremendously.
I found this website and suddenly felt like I wasn't alone anymore. The positive attitudes, the supportive comments, the prayers, the stories of bravery and perserverance...I am truly inspired by so much of what I read. When I've had questions, I can ask those that have experienced the same thing. When I start to feel sorry for myself, I read the blogposts and decide I'm over the worst part and I should appreciate the second chance I was given and spend more time comforting others.
Thank you for starting and supporting this site. Thanks to those that participate, sharing their stories and comforting others. What an incredible blessing this site is to me. I hope it is as inspiring to each of you.
You seem to have found ‘peace’ with this occurrence and I am truly happy for you.
“It is difficult to deal with, especially with no warning. And to have to be fed, bathed, dressed…I went from completely (and stubbornly) independent, to completely dependent.” = I completely understand that horrific feeling and situation! It’s definitely extremely hard to cope with and ‘just accept’! My surgery was an emergency situation (without prior knowledge of the AVM) and my surgeon stated that my relatives should all be called to come quickly & say goodbye because I wasn’t expected to survive. People keep saying I’ve come a long way (in my recovery), which I have and I am soooooooo thankful that I have recovered what I have been blessed & fortunate enough to have regained; however, I can not ‘celebrate’ those achievements yet, as I am not ‘done’ yet.
Your positive outlook and continued ‘work’ will help you get through this. (Everyone I encounter now that knows I had brain surgery (whether it’s different doctors, nurses, ordinary people, etc.) all tell me that I will get through all this because I am determined to.) Stay safe and never give up!!!
Thank you so much for sharing your story. I also felt quite alone when I found out about my AVM. I thought the doctor meant I shouldn’t ride an ATV and had mixed up the letters! It is amazing how a good attitude can be helpful more than any medication. Keep smiling and keep healing!
Hello Kat! This site is quite a blessing to us all, isn’t it? My experience with the AVM was almost similar to yours. I remember waking up one morning (I did have a migraine), prepared to get ready for work, and then felt a stabbing pain in my head which would cause me to collapse. I would find out three weeks later that I had a cerebral bleed, and then a couple of days later, an AVM which I’ve also never heard of before.
I empathize with your recovery journey. I too had to be bathed, dressed, helped up and down the stairs since I was so week. My friends will tell you how “disgustingly” independent I am, and now, I had to depend on everyone for just about everything. Thankfully, those taking care of me did not make me feel like a burden.
I too, don’t feel like I am along with this website. I feel at home here being with those who understand what I am going through, because they had walked through it too, in their own way. I’m glad that you don’t feel alone here. I enjoyed reading your blog and hearing of your journey. That was quite a journey that you had walked through - it was inspiring to read.
Take care! Look forward to hearing about your updates!