all i can say is SCARED!!!

I am too!!! Having an AVM is a scarey thing to deal with. I have known about mine for over five years now and have been in denial that I have one. I found out about mine from a car accident & have really only had headaches in the past. Just know you are not alone! :slight_smile:

Having an AVM is nothing but scarey…I don’t have a lot of details but I don’t have to. Know that there a lot of people here you can lean on that understand and you will get through this. Hang in there!

Wow, thank you boyh for responding…I have had really bad headaches for years 20+ yrs, that and some numbness in my face, I go have the second mri tomorrow and i will have a mra??? what the heck is that???

I beleive an mra is where they use contrast dye to show how the blood flows throught the veins in your avm…this is what I get every other year because they want to just monitor me for now. Its not much different than the mri and they will just put it into a vein in your arm during the last few tests. Good luck and know you have suppurt here and feel free to email me if you want to talk more!

I wish there was something I could share with you that would lift some of this intense fear for you…just think once you persevere thru this, you will be a much stronger person and all that happiness, peace and joy that you once felt will make its way back into your life!!!

Good luck with your MRA and many blessings to you in your healing!


sure is scarey but many people are still alive and living good lives due to the progress they have made on avm. Mine was 12 years ago I read so much more info now than back then. BUT when its you or your loved one the one thing they can’t cure is the fear … and what if’s… thats life and I am glad I am here to have the fear…

To be honest, the scariest part of my whole avm life was waiting for my gamma treatment. I want to tell you that it’s not that bad bc I’m younger and all I think about is the future. But that is a lie! I think about this avm everyday and when I see my son plating I get upset bc I can’t keep up with him. We are here to support each other and we all understand. And we truly and whole heartily understand all your fears and apprehensions. I used to go on fb to try to connect with my hs friends but they couldn’t understand in hs and they can’t now. When I feel down I try to find somebody on this site. Chances are they understand.

Anita, I too went on Facebook and it seemed like hs people came out of the woodwork. They try to understand but it’s been so long and they have lives of their own. Thanks for responding to Tam’s post and you’re right probably the best to understanding your journey are the people on this site…plus they are really nice… At least that has been my experience. Lean away and best of luck with everything.

Hay and welcome, it is a very scary thing to have to deal with, I am at 8weeks post crani, am still having a few recovery problems but I am now AVM free. I think the scary thing is not knowing when and if your AVM will bleed while you are waiting to see if anything can be done.
Meditation is a good and helpful thing to do, it will relax you a bit more and will also help with the headaches

Best of luck

Kia Kaha Taiki (stay strong, take care)