I just came across this video and found it to be really informative. The medical community knows little to nothing about this condition, so thank goodness for Angioma Alliance...they are funding research, educating physicians and patients alike, and helping patients connect with others afflicted with cavernous angiomas. These nasty things that lurk in some people's brains can be devastating...sure glad mine is gone! :)
Welcome to our blog! I originally started this blog in November 2010 just prior to having a major brain surgery to remove a large bleeding cavernous angioma from a deep part of my brain. You can best understand the gravity of our experience by reading the first several entries.(Nov 2010-Dec 2010) I wrote the first one and my sweet, adoring husband, John, wrote the next several (while I was too sick to do much of anything) that documented surgery, immediate recovery, and our reaction to the surgery complication (stroke)that was revealed 2 days after surgery. This recovery process has been difficult but we are making it. We appreciate all the kind words of encouragement we have received and we would like to thank everyone that has participated in helping us along this difficult journey. Also, if you have any questions about my personal experience, please leave them as a comment or contact me directly at firstname.lastname@example.org and I will respond although I am not a doctor and this is not a replacement for medical care or advise. Please ask a real professional, or probably several. :) I hope to be able to help at least one person along the challenging road of brain surgery and recovery.
Sunday, October 30, 2011
Friday, October 14, 2011
At this point, the biggest obstacle to being back to my old self is probably this ridiculous fatigue. I don't know why it's called fatigue. It sounds so ordinary, and there is nothing ordinary about this type of sheer exhaustion that I feel most of the time. It's as if my arms weigh a thousand pounds each and I try to struggle to carry myself from one activity to another. The smallest task feels like it takes enormous effort. Besides the physical aspects of my fatigue, there is the cognitive side that leaves me feeling in a daze or as I have called it before in a "brain fog" most of the time. I have tried pushing myself, exercising, building endurance....nothing works. I sleep like crazy and could sleep more. When I don't sleep my crazy needed amount, I feel sick literally. How long will this go on? Nobody knows. How does one overcome this? Nobody knows. I am hoping it's just part of the waiting game. It has improved since coming home, but it is still not anywhere near normal nor where I would like it to be.