I posted on here 12 years ago when my husband was diagnosed with a large inoperable AVM he’d never had a bleed and was 52 when diagnosed. We went through all the emotions of feeling he had a ticking time bomb and the devastation when the plan was to do nothing and then the rollercoaster of finding the right level of medication to manage his symptoms. Fast forward to 2018 he was offered staged GKS, a lifeline. We were told symptoms could worsen before they got better and they did and in 2022 he suffered a stroke from which he’s made a generally good physical recovery but has aphasia and ongoing fatigue. Anyway, yesterday we received a letter saying the AVM has been completely obliterated and he’s now discharged from neurology. I don’t think this wonderful news has sunk in yet for either of us if I’m honest and today is no different to yesterday. The AVM and symptoms have dominated our lives for so long and for the majority of our relationship and now it’s just gone but I wanted to share our story for those of you going through it xx
Congratulations to you both! Continue to stay strong!
That is really great to hear. I wish you and your husband a smooth transition to really a new reality. That can be more difficult than we expect, even when the reality is positive after years if wiry and concern. Take Care, John
I know it’s bitter sweet news from all that the AVM has done to him. Please do share with me how long it took from Gamma Knife to obliteration. My son is soon to go through it. Thanks and prayers for you
Thank you for sharing your journey. Hard to believe that you could go from inoperable to being discharged from neurology!
Wondering if you wouldn’t mind sharing what had changed the doctor’s minds? I too have been told 3 years ago that my AVM is inoperable, I have recently suffered an Ischemic stroke 6 months ago with an almost full recovery. I have done the work to find acceptance that GKS is not an option for me. I have had multiple opinion’s all suggesting that more damage than benefit for me due to the location and nature of my AVM. I was 51 when they finally discovered the AVM, after decades of strange symptoms that would come and go. Reading this post has me wondering if GKS might be in my future.
That’s an amazing outcome, I’m so pleased for you both. I’m sure everyone here can relate to your comment about how having or an AVM can dominate your life. So good that you’ve come out of the other side! Enjoy every day.
Hi Chelle, Thanks for sharing the good news… Hopefully you’ve dodged the AVM bleed bullet. Greg
Oh this is such good news! and you are so kind to take the time to report out to this group. Congratulations on persevering and also on standing by your loved one. I hope I am as thoughtful the day we are past this. All the best to you and your husband Chelle.
Thank you for your kind comments. My understanding of why he started off as inoperable but then was able to have GKS was that there was more research around successes with large AVMs using a staged approach as the years went on. Surgical options were too high risk and would only be considered as life saving if he had a bleed which he’d never had. I think he had about gks 4 treatments about two months apart in 2018.
When my husband was first diagnosed and we were at our lowest this group was a godsend for me for information and hope and I hope to be able to pass some of that on with our story that there is light at the end of the tunnel xx
Thanks for sharing your story. I too had GKR in 2011. Many ups & downs, I thank God everyday that I had a good support team behind me praying.
Thank you for your inspiring story! I really needed this right now as I await the results of my third Gamma Knife surgery.