http://avmalformation.org/for-family-and-friends/9-things-not-to-say-to-someone-with-a-brain-injury/ :-)
OK...I thought I had seen it before (darn short term memory loss)....Do you want to Re-Post it on the AVM Survivor Network?
Here is the 10th for us:
10. You need a hearing aid.
The ringing in my ears is so loud, a hearing aid only makes it louder!
oh my goodness this post is right on
hello friends if you see me from the from the front i look fine most people say i look great from the back or side and being bald dont help you see the horeshoe scar what they dont see or feel is the fatigued the los of memory i had my own post hole drilling buisnes worked all over melbourne did hundreds of jobs for builders for twenty years when i met people they say rember that job you did for us its just gone,i now have epelepsy life sure has changed.i have worked so hard at getting my self back to how i was, i am not how i was but i keep working. as we know people dont see what was hard is now ten times harder, but when the going gets tough the tough get goung,thanks for reading
Couldn't have said it any better. I want nothing else but for things to be the way they were.
I would like to be as positive as the others, but sometimes people are not that lucky. Even as medicine as improved a lot since my surgery 24 years ago, you and your wife are facing great risks. There will be problems right away and problems you will not discover until much later. For now, the both of you will have to be strong for yourselves and each other. Work carefully with your wife and the rest of your family to get through these next steps.
I am doing fairly well with a job and still driving a car. I feel I am fortunate to have better recover than many on this website and I wish you to have even better success.
One of my doctors gave me a saying that has helped a lot. "For some, survival is success."
I see I'm not the only one with the ear ringing problem. It would be good to know if someone found a fix to this problem.
This is sooooo ME! and what I deal with every day! I explain to the very few people that still have anything to do with me, this very subject at least one a week if not more. I'm sure it's just as tiring for them for me to keep telling this story as it is for me to keep having to explain it. I really needed this today to remind me I am not alone. Just because I don't know anyone around me like me doesn't mean you are not out there, and I want everyone else out there to know I'm here too!
Gina...This is exactly why we should re-post "What Brain Injury Survivors Want You To Know" often. You are no alone..there are many of us!
I love that, Armand...."For some, survival is success". Thanks for sharing!
I did re-post to my facebook and will encourage anyone on my facebook to share as well!
Surviving is a positive story! I'm not sure but I think it may depend on if the AVM is removed or if the AVM ruptured. Mine ruptured before I could have it removed because I didn't know I had it. So when my AVM ruptured I had an emergency craniotomy and had a resection. Every situation seems to be different and I have heard of people having their craniotomy and getting better with no effects at all. Those of us that have different stories to tell are probably feeling pretty lucky to tell a story! The mind is a powerful thing, tell yourself to be strong and you will!
Hi Folks....
I want to respond to the comments about fear and survival...While I don't have an AVM I am with you in the fragile neurology camp. What we learn deeply having what we have is that life at its base is uncertain. Ordinary humans try to believe it isn't so and believe we can control it.. Fear isn't really about any surgery or another procedure. It is knowing that all our lives are fragile. Survival is about opting for life, not giving up, persevering. All of you live survival, opting for life, loving each precious moment we have. The courage of humanity is doing the best we know how to do in difficult circumstances.In the face of surgery or any procedure make the best decision one can, and then call it good, always opting for life knowing its uncertainties......
When I went into brain surgery, friends asked wasn't I afraid? I said no, fear was not doing it! When one has little choice, opt for confidence and choose life. It was a new surgery, I might have died. I asked to die if it didn't go well.Clearly I survived. But each day I bless being alive -- in a way I didn't before.......even with new difficulties...
Hi Ruth,
I really enjoyed your comment. Having almost died twice myself, what you said is so true.
We had a saying when I was in the martial arts (6 years). If I had both my legs broken, a few ribs and I couldn't get up. As long as they didn't break my spirit... I won.
It has been 30 years since I had an aneurysm in my brain caused by AVM. I'm glad you re-posted this article. I was fortunate to have my AVM completely cured by Gamma Knife Treatment but the first years of recovery did require a lot more effort than it does now. I don't know if I will ever be as well as I was before my AVM but I no longer worry about it. I'll never forget what they told me in my first few months of recovery; learning how to walk and think again. They said I would never recover to 100% of the person I used to be. Well, there is a saying I came across that states "A GREAT PLEASURE IN LIFE IS DOING WHAT OTHERS SAY YOU CAN'T". I know I will probably never recover to 100% of my physical abilities but I do feel stronger mentally and emotionally than I ever have. Most of my friends and associates don't know what I went through 30 years and I choose not to share it with them. Not because I'm ashamed of it; I just don't want to look like I'm soliciting for sympathy. I'm glad I found this support group a few years ago. I'm learning new things all the time now about AVM and other causes of mental and physical challenges. Thank you
Larry
I had an AVM near my right occipital lobe. It was removed January 13, 2011. I had aphasia, trouble chewing my food initially. But I was released from the hospital on January 27, 2011. I went to physical and speech for two weeks. My outcome has been really good. I was back to work partime by March 1 and within three to four weeks I was back working full time. The only main down fall I have had since my surgery is, I sleep almost all day on Saturday. From time to time i have trouble thinking of a word. I can totally describe what I am thinking of, I just can't seem to grasp the word. Extremely frustrating, but I eventually get the word. My AVM was removed completely along with a small piece of the surrounding brain. But, I have to say All in all I would say I have had a 99.9% recovery. By the way, I am in my 50's so the struggle with words could just be aging.
I wish and pray for the very best for you. I hope this has helped you.
Judy
My son loved this, he said it is so true. It truely gives me a better understanding to how he feels. God Bless the person who wrote this! Thank you for the repost!
This is a beautifully written and concise analysis of exactly how I have been feeling since a repair of a spinal AVM that bled into my brain. I had to retie from 38 years of teaching. I keep a journal daily, of everything I do so, that I can remember the next day, what I had done! I simply chalked it up to aging, but it may have just been the experience of my AVM. Thank you for making me feel much better!
Wow. This is great!