Worry over AVM bleeding again

My avm bled again the tuesday after last and I spent 5 days in the hospital. Now I am living in fear that it will bleed again. How do you deal with this dread?

Get zapped bye radiation to hopefully get rid of it or make the cluster of bled - vessels stronger. But they can not tell bye me. I had gone thru an MRI about four - six months ago and all they can tell me is that they may of hit it this last radiation treatment. I had been thru three treatments and it is the same size in the middle of my head. So ah well. Just have to wait for it to bleed again but then if it bleeds again, will they give me another radiation treatment? I do not know.
So I just deal with it. It isn’t dread if you look at it in a closer way to the heavens. Closer way of seeing everything and everyone in which you want to see. Just live life on earth without worrying about it. Now you can do that? Can’t you. Just do it. My AVM had bled twice in my lifetime. The first time I was sleeping for a month and the second time I was sleeping for a week. So just look at it we are still here? Aren’t we, hopefully for a reason.

Lianne: The thing is we don’t know. When I had my bleed and subsequent surgery, I was so close to dying that I was kicking the dirt off of my heals! I survived by the grace of our great creator. Every day is a blessing and I try to live it to it’s fullest. I love I live and I praise God that I have another day with my precious loved ones. My sins have been forgiven, and I have turned my life over to the Lord. He is in control and I do not fear what tomorrow brings. may God bless you with the peace that I have found in Him. Mike O’Brien Survivor.

I agree with what mike has to say…just have faith in God and pray about it and keep your chin up. There really isnt anything else you can do other than that.

amen and amen

hi Dianne, how are you feeling lately, sure hope you are feeling better,God Bless, Caroline

ike said it i feel the same way hat i was fortunate enough to be in the right place at the right time when my avm ruptured.
but since then I’ve placed my fate in the lords hands and have been thankful for his miracle
my mother and father today have a strong belief that everything happens for a reason because i moved to Arizona from NEW YORK and was treated by a fabulous medical staff had i been in NEW YORK when this happened i may not have been as fortunate for the nearest hospital would not have possessed as promising an outcome as my current hospital in Arizona

i worry about that everyday…especially with the heavy training for swimming. i try to have someone that knows around me at all time but that doesnt alwasy happen
wat happens to u when it bleeds? i want to kinda know wat to expect, esp so i can let my friends and coaches know wat to look out for…

Sorry to hear about your bleed. I think we all are afraid of that and you had to live it.
My partner tells me that denial is a wonderful thing- and he’s probably right (don’t tell him I said that, please.)
I do know that you have to deny the AVM the power to control your life.
Hope you are recovering well.
All the best,
Brian

yes I am very thankful for my parents.

well it feels like to me someone is taking about a four inch knife and just jabbing the whole four inches inside of my neck. Pain shoots down and up. The first time I was at the skating rink and I was over heated and began to throw-up, I was twelve. It was kind of grody. Boston Mass. General told me I was cured. Went into the military in '93 and had gotten out in '97. The second time it bled I was coming in from lunch and sat down at my computer and the same pain had struck me in '98. I was thirty. I drove myself home and told my ex to dial 911 and it took them 45 minutes to find the apartment. I only lived about two miles from the hospital. So you can imagine…

Well I am recovering just fine. Just hoping it doesn’t happen again for the next forty years. eeeehhhhh!!!

Dianne
I think that as time goes by and you start to live life normally (is there such a thing) you put it to the back og your mind
I was totally parinoid at first, scared of falling, being hit on head etc etc butit all fades to the back of my mind now, hope you get there as well, take care. Amnda

thanks!
so u didnt lose consciousness? im scared to death im going to faint no one will know wat is going on and i wont be able to tell them to call 911…
wow, 45 minutes?? that rediculous!

No I didn’t at first. But when I had gotten to the hospital I was asleep the first time for a month and the second bleed I was asleep for a whole week. eeeeehhhhh!!!

I’ve been pretty lucky so; when my avm bled I just had an extremely severe headache. It was really bad though: cold sweats, dizzy, nauseated, pain starting from the back of my head but it hurt all over.

God knows I don’t ever want to feel that pain again!

I hear ya. Just hope that the last radiation treatment did hit it, the darn AVM.

I do not dread it. If it bleeds it bleeds. I just deal with it. You never know if it is going to happen again. And lets hope, NOT!!!

I think you just try to live life to the fullest everyday. Also make sure that everyone around you knows what is going on- so everyone is prepared to take action if need be. I dread that my 9 year olds will bleed everyday- this makes parenting very difficult at times- especially since she is starting to hit those attitude years.

Yes I can hear you. But to talk about the AVM bleeding every minute on this network is hideous. Lets talk about the cures and the friendships in which we met over this thing. Instead of the never ending bleed. My AVM had bled twice and I know what your daughter is going thru. It is painful and yuckee. But we are still on this beautiful earth for a reason. eeeeehhhhhh!!!