Lost and afraid

Hello everyone,
Im new here! I never thought i would ever blog but here i am. My husband has a brain a.v.m. We just found out it is operable however, because of the “what ifs” my husband wont book his surgery. We are both really scared and lost. I keep very positive note with him but i dont want to have to be pushy about it. I am hoping that i could hear some succuss stories to share with him to ease his anxiety. If anyone has had an embolization followed by surgery i would love to hear from you!
You are all wonderful and more brave than i could ever understand!
ashley callahan

Hello Ashley and husband. I have had an embolization followed by surgery, was actually among the first of those to do so when it was still considered an experimental procedure back in 1989.
Facing the reality of what I was dealing with was the worst part of it all. Brain surgery seemed an overwhelming concept to me at that time. I was young and considered myself invincible, at times I simply wasn’t strong enough to deal with it so would sleep as a means of escaping doing so.

I was a newlywed with everything to live for. The long and short of it was that I had already beaten odds of 1 in 148 by surviving to that date and for each following year those odds would increase. It was either the surgery or probable premature death so I read much, listened to all the medical professionals and the choice was then obvious.

Not knowing any more about your husbands situation I would advise you to acquire all the credible information you can about his condition and the available treatments. Forget everything you heard or knew about brain surgery prior to his diagnosis.(It can and at times is performed in a manner on par with removing tonsils) Reassure him of your love and devotion and that together you will overcome this obstacle. Be a source of inspiration and a pillar of strength for your husband. Don’t view it as an unwanted challenge in your marriage but rather an opportunity to strengthen and grow your relationship into one very few could ever understand.

Feel free to ask any questions or have your husband do so directly. I wish you both well and think in short time this wont seem nearly as frightening.

John

Hi Ashley,

I can’t top John’s comments, but I will add my best wishes for you and your husband.

Take care,

Debbie

Hi Ashley! I am new too (joined yesterday!) and was feeling lost and afraid… until I found this site. All the best to you and your husband and I am sure you will find this site a great support, as I have in the last 24 hours since I joined …
xxxx

Ashley, welcome to the group. You have come to the right place for support and information. There are hundreds of people here that have been through what you husband is and much worse. There are also hundreds who have been through embolization and then crani, myself included. I understand your husband’s reluctance and I don’t know how to help you with that part. I can only tell you that like so many others here I should not be alive. I had a major bleed and my doctors told my husband that another bleed was imminent. If I had bled again, it is very doubtful I would have survived. Surgery was my only option. It saved my life. Just know that this network is a wonderful source of personal experiences. Everyone here is willing to offer any support that we can, any advice you need, or even just a place for you to vent if you feel like it. Best of luck to you and your husband!

Hi Ashley - welcome to the group. I had my angio 3 weeks ago and will be opting for surgery in early November. I have just come through 3 embollizations for lung avms so although I am pretty shook up and frightened, I am feeling a sense of relief at having made the decision. Following the surgery, the avm will be gone - FINITO! - and I’ll be able to get on with my life. The surgery will mean about 4 months off work (provided no complications) and while I am not trying to minimize the seriousness of ‘brain surgery’, it feels like the right thing for me. I am standing in a positive place about this (I have to…) and focussing on the good news. What is the good news? The good news is that surgery will fix this (in my individual case). Think about it - there aren’t many serious illnesses that you can say that about! It is a wild ride emotionally, and my husband is my rock. He is being supportive, understanding and sensitive. Crazy, but we are actually closer through this. Hang in there…the answers will come when they are meant to and you’ll get through it together. Believe. /pat

hi ashley, you are not alone here.
yes it is a scary time for you both. my husband and i were terrified (we were 28yrs old)
my story was a success and so will yours.
your husband will be fine. stay strong for him. keep him positive. this is important.
the risks are there yes, but you will fight them when it is time to recover.
my husband and i were told about the same risks, it scared us, terrified us, but we made the disission to have the operation, and what ever happened after that WE WOULD FIGHT IT TOGETHER.
you will get through this xxxx