10 years post occipital avm discovery

Hi I’m 10 years since my avm was found. Had gamma knife and embollization of avf. I am now experiencing recurring headaches, worsening sight disturbance and strange sensations in my head. Memory loss is getting worse also. I have had heminopia since 2015, six months after gamma knife. Has anyone experienced things going strange after this length of time.
I’m awaiting a report after have MRI carried out of my brain. Thanks.

Hi Lorna,

You’re ahead of me, so I’m watching how you get on with interest. I think it’s fair to say you’re not alone in needing or suspecting further work: there are definitely others.

Sending lots of love from my part of Leicestershire to yours!


Hi @Doonie. Sorry about the trouble you’re having. I just wanted to chime in and say for me this blasted AVM journey has really typified the remainder of my life. I bled in 2000, thought it was over. I bled again that summer in the ICU and had to be put in a coma. Rehabbed and bled again in 2010 when I had another AVM that they didn’t see before bleed. Rehabbed, worked a bit more then I. 2018 I had a stroke. Got fired from my job this time and applied for disability rather than reenter the rat race. Write a book “Malformation: when bad things happen to the right kind of people” to answer many of the questions that no doctor could give me answers to. All that to say, as Aerosmith said in one of their hits “…life’s a journey, not a destination and I just can’t tell just what tomorrow brings…”. So for me, and maybe for you as well, I can’t say what gonna happen tomorrow. But I can say with 100% assurance we made it this far today! So keep your chin up and know there are others, precisely with the struggles you’re dealing with to, who are hoping you to succeed! Check out my story in the book. And if course I hope you have a great new year! Blessings as you continue, grace & peace as you go!

1 Like

Wow, your journey makes mine sound easy! I haven’t had anymore bleeds (that I’m aware of). You think about the things you’ve lost, independence as I dare not drive, reading like a 6 year old etc but have to be grateful that I’m alive to tell the story. I’m fearful of what’s to come. Just wish the strange feelings and sensations inside my head and headaches would go away. Must stop complaining and get on with it. Hope your journey is a better one.

1 Like

Hi Richard
As I think I said, I’m waiting to hear more from the neuro bods at Nottingham Queens Medical come up with. Troubling when I’m told that there are changes but they leave me fearing what they are! Thought it was all done with. I’ll post when I know anymore.
Thoughts going to you from another part of Leicestershire.

1 Like

I can vouch for them not being half as quick as anybody would like, so hang in there! I’ve done a load of waiting while feeling increasingly poorly, so I know how that part is :blue_heart:

We all have various struggles and problems but I’m glad that I draw breath and I’m happy to help and encourage others as they walk through life as well. I wrote and published a book specifically to that end but it’s so very nice to meet you as well! Check out www.mymalformation.com.