AVM Survivors Network



Hello all, I'm feeling ok today but I find myself to be continuously terrified that I'll have another bleed and it may not turn out so well. I have avm in the pons area of my brainstem and it bled back in February. I have made a great recovery, I am pretty much independent on my own now. When I first presented, I couldn't swallow whole food, walk, double vision or pee on my own. Now I still have swallowing issues, have some double vision to my left , but I"m getting around pretty good. I'm trying to just "forget about it", but I find it very difficult to cope . I was just wondering what everyone does to cope. I have a great young family, and they are so great. I don't want to waste my time moping around :/. Any encouraging comments would be appreciated. Thank you.



Hi Eric,

My AVM is within my spinal cord at the brain stem. It bled, again, in 2011 and I too have had to go through a recovery process. Some things have gotten better but other things have not. One of those things, although not physical, as you mention, is being terrified of another bleed. I believe it is quite normal for us to fear another bleed, if we didn't then I would have to question our sanity. With that being said, it is what we do with that fear that matters.

I won't lie to you and paint some rosy picture of how I've overcome my fear and can now scale mountains with nothing more than some esoteric harnessing of positive thinking. For me it has been a daily struggle, some days I lose, but not everyday. The trick is to wrap yourself up in someone else. Your young family I assume includes your children. You have the prefect built-in distraction needed, lose yourself in them. Nothing could be better, for you and for them.

You've suffered a brain injury and are still here and able to talk about it. That is huge. Give yourself a break and acknowledge that you have limitations while at the same time doing things to help in the recovery process. If I may suggest - play with your children, as another child would, within your physical ability to do so without overtaxing yourself. You'll be able to mentally escape from the fear for awhile without being in denial and you'll build up strength and motor skills and you and your children will be building memories that you'll have for a lifetime and beyond.

I'm not a believer in the 'forget about it' philosophy. Sounds too much like denial of reality, which I believe leads to difficulty in coping, as you've mentioned. You don't have to hold it in constant remembrance but I believe you have to accept that it happened and this is how it has impacted your life. You are now different, you have to adjust how you do things.

Will we bleed again? Maybe, maybe not. No one knows except for God. I don't know your beliefs however I know that I would not be able to cope if I did not have Him in my life and the knowledge of where I'll be going if I do have the big bleed. "I can do all things through Christ which strengtheneth me." (Philippians 4:13)

God bless you and yours,
Kim Palmer



Hi Eric, I had the same issue as from my bleed till my treatment I had to wait 7 months, Which may not seem like a long time, It felt like it, I found it worse late at night when trying to go to sleep, Thoughts of dying or being changed so much that I would need to have full time support etc, These are perfectly natural things to think, I kept telling myself all the time "don't worry you'll be fine" so much so that eventually I believed it, And I now no longer worry about things I cannot change, If you cannot control it then worrying about it is a waste of time, Enjoy life, Trust in your medical team and everything will be fine. as the time came closer to my surgery I only slipped from my positive thinking for about 5 seconds when I thought I may not see my 3 young sons again, This thought brought tears to my eyes (As they were wheeling me down to the operating theatre) But as quick as that thought came I pushed it away and gave my self a shake and said in my mind "stop being silly you'll be fine !" and guess what I was ! :) , The story here is that if you keep telling yourself you will be fine then eventually you will start believing it, Its a hard thing to do but worth a try, Positive thinking will make you a stronger person and make your life easier and those that care for you will notice the change also :) , Take care




Hi Eric, it’s been over 5yrs since my bleed & operation and I still feel like I can suffer a bleed again no matter how many scans I have …every headache or weird feeling gets me worried at times also…as humans it’s expected to suffer from trauma experiencing what we have endured BUT… Life is too short we have kids and family that need us and I think of them when I slump into those thoughts…try and stay positive and enjoy your life with your family and the blessings of children… God bless!



I agree with Kim P. My faith in God sees me through. I just came to the conclusion since no one's getting out of here alive anyway that it doesn't really matter how I go! And until that time I intend to live life to the fullest, thinking of every day as a new adventure. I know my limits and sometimes have to adjust to a new normal when something different pops up, but hey, that's just part of MY adventure.
Beyond that I try to eat healthy (I love greens, especially kale, and they act as coagulant) exercise within neurologists limits, avoid NSAIDs, get plenty of sleep and rest when I must...and life goes on until it doesn't anymore and I believe I am in the hands of an all-powerful God.



Hi Eric-As a survivor, coping with the after surgery part is not easy at first, both physically and emotionally. Meditation has helped me to quiet my mind, so you may want to try guided meditations to help change your mindset in trying not to be consumed by fear. You may also want to speak to a counselor or Neuro psychologist as well. It seems as if you have made incredible progress and you have a beautiful loving family on your side. These are two things that should be of some comfort and help in staying more positive. Please seek help, as those skilled therapists can certainly help you.