Avm awareness || my story

With October being AVM Awareness month, I figured I’d share my story. It’s been a while since I last been on this site. Below is a video link to my story. Feel free to ask me anything.

My Story

Cheers!

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John,

Very nice share!

I think the only thing you missed out is DID YOU EVER GET TO JOIN THE FIRE DEPARTMENT?! I just need to know!

Today seems to be video diary day. @reallygeekin just shared her craniotomy story video, too.

Thank you for sharing. I think it really helps to have a medium other than the written word to convey these things and to see real people through a video is so easy to consume, so friendly, that it is really helpful to share this way.

Hoping you spend a bit more time on here helping others through the scary stage of discovery. That would be great.

Very best wishes,

Richard

2 Likes

Love this share!!! I always enjoy hearing about people who were able to find out prior to rupture because the doctors that diagnose this early can really help prevent severe brain damage or death. I’m grateful to be here and love hearing stories like yours. It brings me hope that people will start to pay more attention to their health, ask questions, and not just be okay with covering it all up with meds. I’ve had migraines my entire adult life and never thought anything of it. An early scan might have revealed the issue, but often times we are too afraid to ask or inquire further. This is awesome. Well done, John! :smiley: :heart:

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I agree. Imagine if everyone had the option to have some type of full body physical/scan at an early age. Or really at any age in general. Even though I was healthy and had 0 signs of my AVM, I was able to find out I had one during the MRI I took. As a kid I used get really bad migraines but just always thought it was headaches. I never said anything about this when I was growing up. Maybe it was linked to the AVM or maybe it wasn’t. I wanted to make a video about my experience for a while but was too scared to share it to the world. But I remember when I found out I had my AVM I was researching everything on the internet and there was very little information on peoples stories besides on this site. Thank you for the kind words and hope you and you’re family are doing well. Cheers!

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Hey Richard!

Thanks for the kind words. As of now I am not in the fire department yet. But, let’s just say I passed everything to to get back in about a month about. With the current situation in the world, I’m waiting for the next academy to start. I may start in December if everything aligns. I hope that maybe this little video I made can have a positive impact on someone going through this situation currently. When I was on this site while I was going through the early stages of treatment and advice, I got a lot of valuable information and advice through people on this site and hope to passed some along. Hope you and your family are doing well!

Cheers!
John

John,

It’s great to know you got through the medical eventually and are just waiting to get in. Well done!

We are all good so far in this coronavirus madness. I am rather expecting the shutters to come down fully on our freedoms again but it’ll just be a matter of being patient for my family. I do think we shall need to look after those whose jobs are seriously at risk in these times and getting through the winter seems likely to be tough.

Best wishes,

Richard

Dick,

I agree. We are going through rough tides. Here in Chicago our cases have drastically increased and our restrictions are becoming tighter. Just gotta stay strong and protect yourself and others as well. People are so naïve to understand the reasoning behind wearing a mask here in the US. We’ve been so spoiled with everything and that when we have to follow orders for the safety of our health, people think we’re being “controlled” because a lot of people are recovering from Covid. When in reality we are trying to stop the spread of a highly contagious virus from over populating our hospitals. Stay safe my friend.

John

1 Like

Hey John, thanks for sharing your story. I am one year post gamma knife for my AVM. Mine ruptured April 19, but I’m all good. I totally hear you about taking time to make the treatment decision. Wise words. Also you capture the anxiety of the treatment dilemma very well. You also speak very well and fluently for someone who doesn’t like public speaking! Most of all though it was very encouraging to hear your experience of gamma knife, specifically that you saw little progress at one year but then good results thereafter. Hearing that has really lifted me tonight as I’ve been feeling anxious and disappointed after my recent one year scan (which shows no change) even though I knew it was probably too early to see results. Thanks again!!
Jonny

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Jonny!

Thanks for watching and hearing my story. The sole purpose of me making that was to bring some positivity and hope to people going through an AVM. We are all strong individuals who have a drastically thrown curveball sink into our lives, no matter how we discover our AVM. We just got to stay strong and hold fast hope. Just like with anything in life. You will over come this. Stay strong! I know the feeling you have. The most change I seen on my AVM was when I was in my last effective year of radiation. I had a pretty large one that was 3.6cm. I had a lot of doubt going in but you know, you found it out and that’s a blessing itself. If you ever need someone to talk to, don’t be afraid to message and ask me anything! Cheers!

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Great presentation.

1 Like

Listened to the whole video -

Thank you for making it -

And, always best of luck to all of us