As my title states, the war is over. After my angiogram last week, three years after my round of gamma knife, my surgeons have confirm my grade 4 AVM is gone. Three years ago, while at school exercising, I experienced a horrible pain in my head, which led to me passing out. After the trip to the hospital, it was found I have an AVM, and I immediately felt my world end. 6 months after that, I had my gamma knife procedure to begin my fight against mine. I remember keeping myself awake every night diving into every piece of research I could find and trying to understand my condition and I remember all of it saying to expect to go 6 years after the radiation was done. I am shocked that time was cut in half, and I can close this chapter. I am grateful for my surgeons, the technicians who assisted them, my friends, family, and everyone else who gave me the support I needed to get through this. It was such a journey, and frankly, I don’t even know what to do at this point. When my AVM ruptured, I bought a wrist band that states my name, “Brain AVM”, and my emergency number. I wore it everyday for the last three years every time I left the house even for a quick grocery trip or even gas. Now, I have no reason to wear it. It feels so odd to simply no longer have it be a part of my wardrobe. As I tuck it into my bedroom drawer, I tear up a little bit actually. Not because I miss the AVM, I wish that thing never rears its ugly head again. Rather, the bracelet is no longer a reminder that there is something dangerous in me, instead, it is a reminder of my ability to fight, and my ability to move through horrible adversaries. I suppose a good way to put it is that it is now my war trophy.
Well, I will conclude my post here. I hope those of you I spoke to over the last few years are doing well, and I hope anyone in the future, just beginning their fight find some sort of uplifting in what I write here. If anyone in South Florida has suddenly found there’s and stumbled upon my post and would like to connect with me, feel free to reach out. I plan on still checking in on this website as I can.
I think I will take up surfing now. Until next time my friends. Kev
Great news, I am thrilled to hear of success. Enjoy surfing! We sure hope to see you here from time to time, and I have enjoyed and benefited from your contributions immensely. Take Care, John.
Congratulations oh my thanks to God! Can you share the reduction process of the AVM size year after year ? Did AVM get gradually smaller year after year or it was a drastic reduction in size all of the sudden in year 3? My son got GK also in 2024 but has not reduced much a year later. Thanks!
That’s fantastic news and I’m really pleased for you.
My tip is that you get copies of your scans so that if anything changes in the future you will be able to identify them easily. I hope you remain fully recovered and never need them.
I had a rupture in 1990, eventually recovered, had surgery and was signed off. These scans are now gone and there is a hole in my brain. When did that happen?
Fantastic news! If you can pop by from time to time when you see people going through similar worries to you, I can tell you I get more out of helping people a few steps along the way by being here even though I’m fixed (and I hope fixed forever) than by doing almost anything else in life. There is much to give to others from our most difficult experiences.
However, it is also great to put the whole thing behind you and just get on with normal life.
Thank you for sharing.
I’ve still got my wristbands in the jewellery box next to my bed, along with my watch and things like cufflinks etc. It has been part of our life but it is in the past.
Fantastic news! The AVM is no longer accompanying you through life. It is part of your life story and the challenge it presented helped shape the individual you are today. Congratulations!
Hi! Great question! Apologies it took me a little while to reply. The reduction was actually quite drastic, which surprised me. In my first few scans, I had no change. Then, I had the reaction to the radiation and had an edema which led to the dance with dexamethasone. A the beginning of the edema, there was no detected change in size, maybe a tiny change if I can remember, but at the end of the edema, I had a rather large reduction. I waited another year after that and had another MRI done in May of this year, and that displayed more reduction. A few months after that I had the angio and it confirmed my AVM was gone. So, in short, it was fast, which shocked me but my surgeon was confident it would be gone by this point. You shouldn’t expect to see any change in the year mark (depending on the size of your son’s AVM). That is a little too early. Just keep in mind that everyone reacts differently to their treatment, and may go longer than me. I know a lot of people who went years longer than me. Have faith! I give my best wishes to you and your son! I am hoping he will be free of this thing soon!
You mentioning Skiing actually reminded me of something I wanted to try a while back. I have really wanted to try snowboarding ever since I missed my chance back in 2019. That’s a great idea. Update us how you are doing. My best wishes to you!
Thanks Richard. I plan on popping in still. I think it is good to help and provide advice to someone who could benefit from it, the same as you said. I also in general enjoy keeping in touch with the people here. It was three years of my life here, I can’t just vanish!
Thank you Kev for your answer! It really does help all of us in the waiting game to finish with this. Definitely understand we all are different and that my son may take longer than you. We all wish you the best and very happy that you can move on without all the worrying. Thank you for your wishes for my kiddo!
Thanks for sharing @Kevphilosophy
Mine is 3-6 times smaller (6x6x5 mm), so I’m hoping to obliterate even faster, although I have different location (posterior fossa).
Such awesome news & I agree that the AVM even though is gone, will always be a part of your life & story… this is what truly makes you a survivor & your words will help many others here going through the worst part of the journey as we speak… God bless!
Your experience makes me reflect in my own. I chose craniotomy because I didn’t wait for potential success. But the surgery left my with permanent (albeit minor) vision loss and potentially other ailments, which hard are to assess without a control group.
Are you cured, symptom free? Sounds like your patience paid off. Word.