Arteriovenous Malformation (AVM) Survivors and side effects

My mother (49) had experienced stroke like symptoms this time last year. Several months later her Nero physician order some scans and he observed an abnormality in her brainstem (ponds). She recently undergone two surgeries to embolize the avm, he was only able to apply the glue to only 50% of the desired area. Now the physician is recommended she seek an second opinion; possible radiation (gamma knife). It’s just emotionally overwhelming seeing my mother go through this, I feel helpless. Thank you in advance for hearing me out and responding.

Hello,
Thank you for members and moderator support. I posted a couple of times 1/31/19 and for the next few days. Recently, I have been lurking and trying to think about engaging. I would like you to know how very much this website has helped me even when I was not posting. I had a surgical fix to my avm that left me with some unexpected deficits. Posting is now more laborious. And I was away from home for well over a month. But, I like the positive and helpful attitude I find here. So this is my thank you to those who help and contribute to Mayo's website. (to name a couple- Kari Ulrich, avmbeller, Lisa Lucier to name a couple off the top of my head) . I hope to find more help with rehab and being positive is key for that.

@mockinbrd Thank you for lurking, thank you for posting and updating us on your AVM. I wish I could reach through the internet and give you a hug. I lurk too... sometimes that is the only strength I have. Sending my love and positive thoughts for healing. I will hold off on asking you questions, but when you have more strength would like to hear about your experience and deficits. I know it took all of your strength to post today. <3

Hi, @ad_walker. Just wanted to check in with you to see how your mother is doing? You'd mentioned a potential second opinion and/or gamma knife treatment for her. Are you proceeding with either or both of those?

You are welcomed! Thank you for posting your progress and keep being positive! I had several AVM repair surgeries but my last one, 2 years ago, left me with neuropathy on my left side. The burning sensation gets very painful but I still remain positive and try to find help. Has anyone had any positive experience with acupuncture for their AVM after repair or neuropathy? I was thinking of trying it next. I believe staying positive is the way to go to overcome the deficits. Recovery is a slow progress so hang in there! Glad to see you are doing well.

Does anyone have experience &/or knowledge regarding a visual cut. After surgery one result was a limited visual field. Would appreciate any ideas on this issue.

Hi, @mockinbrd - just wanted to ask you more about the visual cut you mentioned experiencing after surgery. Are you looking for help dealing with it, finding a doctor to see you to address it, or what information and support would be most helpful related to your limited visual field?

Hello Lisa, how are you dealing with Rochester snow? I thought April showers were suppose to bring May flowers, not snow. Oh well. Hope you have a great summer after this winter. You guys must need it.
Now...visual cut. I don't quite know where to get help and I'm a little hesitant about asking. I'm adjusting to keeping myself safe. I bump into things I can't see. I was told to 'scan' by P.T. but....that doesn't cover all bases. Again, I welcome all suggestions. Oh, I did get a walking cane. That is a huge help. That gives me a sense of where I am, if I'm out walking.

Yes, we did get quite a bit of ice and snow in Rochester, Minn. this past week. Thought we'd put away our snow shovels for the season, but alas, no.

Bumping into things sounds difficult. Getting some ideas from others would be great.

What I'd suggest the most for the visual cut and suggestions for managing that is to post in the Connect eye conditions group https://connect.mayoclinic.org/group/eye-conditions/. I think there you will find other members who have quite a bit of experience with eye issues. In Getting Started on Connect there are some instructions on how to start a new discussion https://connect.mayoclinic.org/get-started-on-connect/.

Hello, I stumbled across this forum desperately looking for information about AVM. A rare disease that attacked my 18 yr old daughter the morning of April 6, 2019. She is in NICU fighting for her life. I never heard about this abnormality of veins she was such a healthy child nothing out of the ordinary. May God Bless You all I'm hear reading your posts and I'm in tears. God Give us Strength and Power to see this through.