Hello everyone please forgive my spelling. i read on this site almost everyday. my herat goes out to everyone. my wife post on here sometimes. i have trouble seeing alot of the time i do have two avms and it has been abought a year since my bleed. but the dotors just dont want to do anything yet until they grow or bleed again. i stay so weak all the time and dizzy. i try so hard to just get up and go but my body just wont let me i have been to three other dotors and they didnt want to even try anything at this time.the headackes seem to never stop. i have other health problems also so i cant just take any medacations. i just cant seem to get past the being scared all the time. iam seeking help and it does seem to help to talk to someone. i do take meds to help keep me calm but they just dont seem to be enouugh. i have worred myself so much. not so long ago i had a heartatack and the dotors told me my heart was fine they said that they beleave it was just the stress that caused it.i have had more mris and mras and catscans this year then i can count.it has just took me to my knees that one min your at work and the next second iam on the floor fighting for my life.i have always been the peson to just let stuff go and keep going .but this i just cant seem to get my arms around. i have just put this in gods hands and pray he will show me the way.thanks for letting me get this out and forgive me for going on so long.my prayers go out to all of you .
Do your docs feel it is too risky to do any treatment? Embo, gamma, any radiation??? Why do they want to just wait? I think it sounds weird that they want to wait till it bleeds again. Isn’t the point to “avoid” a bleed??? I don’t know, I’m not an expert on the brain ones by any means.
You know, I’ve often said that I feel “lucky” that my AVM is in my face. Sure I look different and have the social impact of having a deformed appearance. But I’ve also had my entire life to come to terms with this difference, with the limitations, and with the AVM. I’ve known about it and been having treatment for as long as I can remember. And I’m relatively well adjusted considering. But you brainers…you are “normal” your entire life, and then Bam! You are hit with a devastating bleed and have to deal with the physical AND emotional after effects. It takes a strong person to be able to internalize that and figure out how to cope.
I’m glad to hear that you are getting help. And it does help to talk about it, write about, to share those feelings and fears. It’s great that you and your wife found this site and I do hope that it helps you. People here can understand the struggle you are facing and the difficulty you are having.
Phyllis just post a similar post yesterday about how she is having a hard time coping. So while this may not be the company you want to be in, it’s good company the same. And I know you feel that way.
Good luck with getting your arms around this. Reach out to others in the group. Everyone will want to help you with this! And of course my favorite piece of advise- have a chocolate milkshake. They make everything better. 