Hello everyone, I found out about my AVM about 25 to 30 years ago, dr. Didn’t want to do anything at that time, now that it’s bleeding they want to do surgery I am scared to death like the rest of you it is in the right frontal part of the brain. The doctor is supposed to call me back because he gave me a couple of options and I didn’t understand it and one of them so I will get back as soon as I hear from him.
Hey Tammy,
Welcome to the group. I hope you find answers to the questions you have from this community. We’re all here to support each other.
I’ve moved your post out to your own topic, so I hope people notice you a bit more easily.
Welcome!
Richard
1 Like
Richard thank you, I can’t see very good, my right eye has gone from a -2 to -375 not caused front the AVM.
Hello Tammy
Welcome to the group
So sorry yours is bleeding, I know that can be very painful. Hopefully when your doctor called you got all the information from him. I know sometimes they talk like we are supposed to know what they are talking about.
This is scary and its ok to be freaked out. Ask your doctor how many people he has done the procedure on with what you have and how many people have had a stroke, or died-
Also get a print out of your visit sometimes there is stuff on the report that they might of forgot to mention
Best of luck
Angela
1 Like
Maybe you may record your conversations with you doctor, almost all do not mind that. It allows you to re-listen to that conversation may times over. I also write a numbered list of questions and make 100% sure we at least discuss everything on the list before our visit is over. I think my doctor actually admires that and it seems to keep our conversations focused.
Warmest Regards, Rob
Rob, thank you, I couldn’t record, and he was really happy I brought a list of questions. I was wondering if anyone has constant ringing in their ears?
1 Like
ringing or whooshing? I had the whooshing
Tammy,
Post embolisation, I’ve got regular tinnitus perhaps worse than ever. My pulsatile tinnitus has gone. I still think I might have something lurking in there but my consultant believes I had quite a bit of blood diversion going on and now need to get used to different pressures in my head.
I’m keeping cool about it and see how we go for a bit.
Richard
1 Like
I have both, but mainly ringing. And it is making me crazy, tv blasting so I can hear it over the ringing
1 Like
Wow Richard, this ringing is making me nuts.
Well, I’m nuts, too, but I don’t think I can blame it on the ringing! 
The only thing I do is ignore it best I can. Mine is not so loud as yours, I think, but if I concentrate on it, listen to it, it gets louder, more intrusive.
I remember going into the hearing test room in hospital last summer. Never is there a quieter place. And I was being tested on the quietest sounds imaginable. Your head turns the volume up incredibly under those circumstances. My pulsatile tinnitus (which I had much more than regular tinnitus at that point) was shouting at me like crazy. Quite amazing.
Do your best to put it out of the way. I know as it progresses, gets louder and more intrusive that is very difficult or perhaps impossible but I think its the only thing to do.
Have a great holiday weekend!
Richard
1 Like
Hi Tammy
yes that is how I was before my 1st angio/embolism
I also found that sleeping on my right side was a little better but not much mine is on my left side near the ear. I felt like a zoombie cause I could not sleep and it got worse just over a few months which the dr said it was growing and getting worse-
Are you going in for gamma or for an embolism soon?
Angela
Thank you Richard, at least I know I am not alone, I am always being asked why is your TV SO LOUD,
When I saw my dr. Last, was March 2017, he said the AVM is large and is not bleeding, then told me I had to bring benign brain tumor, and he wants to watch it, I think it is my age, 54…
Angela, so sorry I have not been on here, my mother has been very sick, I have had no time to even think about my own health, my AVM is in the right frontal very deep, I have had 1 angiogram and the dr. Wants to just keep an eye on it. I will see if I can upload this pic I got from when I went to see him on Jan 4th 2018, he said it in a very dangerous place, it would take me the rest of my life to recover from a Craniotomy I just don’t know what to do, my ears my veins are enlarged in my head you can see that in the pic, and I have a benign brain tumor, it all is just so much. It won’t let me upload the essay pics darn it
1 Like
DICK, well I think I am too, LOL, so sorry I have not been online, my mother has been so sick for the last 7 months, ears still ringing and AVM is still growing, I think the AVM and the Brain tumor are in a race to see which one will grow up faster, lol
1 Like
It’s not a good thing, but good you can laugh at It! We always have to keep a way of staying relatively sane… 
Lots of love, Richard
1 Like
@Mni Have you thought about maybe sending your scans to Barrow in Arizona for a second opinion? What about Gamma Knife treatment or embolism?
I know so many people are sick so sorry about your mom!
Angela
Angela4 sorry I have been away for so long, my mother has coded 3 in the last 2 months, but as for my AVM, doing nothing because the dr. Says it is in a bad place, they found mine 30 years ago and no one knew what to do with an AVM, I am 55 now hoping and praying it doesnt burst. How are you doing?
Angela4 I have never heard of the place…