No bleed buuuuuuut

so i have been unactive on here for a while but by no means has my avm been off my mind. now my question is kinda more geared at those whose avm hasnt bled but i would love all opinions :slight_smile:
lately i have been doing, dare i say it?, great. tho by no means am i stress free my constant worry and headache that i had over my since my avm was discovered and through the start of school is kinda gone. but i am still worried. i will lay in bed for hours imagining the way my bleed will happen, where i will be, if something triggers it, who is there, how they react, my friends reaction when they hear, what kind of treatment they will do (becuase i have been told my avm is too dangerous to operate on), how my recovery will go, how my future will change, etc. it just goes on for 2-3 hours at a time sometimes and i think part of the reason i do this is because i have NO FREAKING IDEA what my bleed will be like because from what i can tell everyone reacts different. there was one incident over the summer i thought i had a bleed after being hit in the head super hard during polo but it turned out to just be a local reaction…but anyway my question is does anyone else do this??? i dont want to talk to any of my friends or family about this because they pretty much think its done with (except for my mom who pretty much wants me to curl up and quit polo and swimming “just incase”…not going to happen…) and idk if these thoughts are normal with our “condition”

sorry for the apparent randomness…lots on my mind :confused:

:heart: jess

Jessica ,I don’t think you are the only one that thinks about it. I went 16 months without anything happining, then I had a seizure ;due to my meds . I was bearlythinking about it anymore.When I had my last MRI they said I had a small bleed ? I didn’t even know I had . After all this time I’m back to thinking about it all the time .I THINK WILL I BE ALONE ; WILL I WAKE UP ;WILL I BE THE SAME; . Pretty much the same things you think …I’ts like they say; ONCE YOU KNOW YOU FEEL SICK . For me it was better when I didn’t know. Ilike you have one on the left ware they can’t operate. All we can do is wait .Best wishes for you !

Okay, Jessica. I am not the one with the AVM, my son has one, BUT I can tell you that I do the same thing as you do BUT with him as the main character… Every time he goes out somewhere, is at school, stays up late, etc etc… I go thru what my “plan” would be if he were to have a bleed AND what the possibilities are if his friends don’t call 911 fast enough, or will they know what to do, or what if he is alone somewhere and on and on. It sounds SO crazy but I do it EVERY DAY and sometimes in the middle of the night and it is actually what keeps me sane, in a way. I am just the kind of person who needs to have a “plan”. I feel like I can’t control if he has a bleed but I can do my damndest to make sure he has the best chance if he does have one. And it comforts me in a strange way to constantly do my “plan”…but of course I don’t tell anyone. lol
All just part of the insanity of this situation. I feel so badly for you that you have all these thoughts at such a young age. I think you should share them with someone and tell your mom that you are doing this. I would certainly want to know if my son was having these thoughts and I would like to thank you because I am now going to ask him.
I think it is really normal. You’ve been given this HUGE life-changing diagnosis and then you’re supposed to just “go on with your normal life!” What?!? I am still trying to figure out how one does that. I think it is great that you shared this with us.

I never really thought about my AVM bleeding over the years except when I ended up in the hospital with those super bad migraines and then when the seizures started. It started for me four years ago when I really went down hill even though there still was no bleed. I now wonder all the time when or even if it will happen. It drives me crazy. I have not stopped my life because of this though, my life has been altered because of the side effects I have from the AVM. Sometimes I find myself yelling in the mirror “just bleed, get it over with” like I am a crazy person. I had four embo’s and two radiation treatments so far but it is not obliterated yet. I think the fear will be with me until I hear that word from the docs “obliterated”. If they are able to accomplish this.

i will think about the various places i am most often (pool, school, work…) and go through how my coaches, teamates, friends, coworkers, etc would react because some of them know and some dont (and what really scares me is no one at work knows but i dont feel comfortable enough with any of them to tell them…) but ill imagine myself passing out in practice sinking to the bottom of the pool unconcious and someone dragging me out and going to the hospital ot just collapsing in excruciating pain in the middle of class (and unfortunetly in half my classes i dont have a friend who knows)
and idk wat my plan would be because i have no idea wat my bleed will feel like because i used to have feelings like a knife was going in and out of my head by my avm repeatedly or headaches that would make me nauseos but my mom thought i was overreacting and anytime i mentioned them she would say, well why dont u quit swimming/water polo?? well those are the only things that keep me sane so thats not going to happen…so idk if ill just get a headache or if ill actually stroke or pass out or what.
and what especially worries me is i am going 4 hours away to college next year and i am scarred to death something is going to happen. i am going to get a med alert bracelet but i only plan on telling my roomate, close friends, coach and maybe teammates (depends…)

and i agree pauline, ill battle with myself about if id rather have not found out about the avm bc now its always there (mine was found practively and nothing other than radiation has happened)

and idk if i want to talk to my mom about this bc of what i said before, she thinks im overreacting i think…and my friends…idk…most of them werent really there for me
i have played around with the idea of talking to, dare i say it? i shrink…but thats expensive and i know my mom and shed want to know wat happened and i honestly dont think id have time to go

and im sorry that most of this sounds like a rant, it is…i dont have anywhere else to go and journals just dont do it for me…

Jess, when you get to college, there should be a counselor on staff and you wont have to worry about paying for it…its part of your tuition! I think you should consider letting your professors know about your condition so that they can be aware and know what to do in case of emergency. I think that will alleviate some of your fears.

I had migraines for as long as I can remmember. Then I started having trouble expressing myself and my mri showed the avm. No Bleed so far. I also found out I had and still am having partial seizures all my life. Gamma done this past spring. AVM of course still there. Very depressed now. Has anyone else experienced personality change following Gamma? Like I am very anxious, need to be on meds for it. Always wondering if the stroke is coming. And am afraid to go out in public without a family member. Haven’t been able to return to work because I am soooo stressed and have this weird anxiety now also. I worry about stress too, if I get too stressed out I am afraid a bleed will occur. Am 48 years old and not enjoying life much since this diagnosis and treatment.