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AVM Survivors Network

Hi! Im Stuart

Hey guys, my name is Stuart. I’m a 19 year old male from the Southeast of the USA. In late fall of last year, we discovered my AVM because it bled. I had a headache, slurred speech, double vision, trouble walking. AVM was in my cerebellum, so that makes sense.

Anyway, I’ve almost completely recovered from that event. I had an embolization which failed, and then surgery to correct it. Neuro says he got all of it. My scans are coming up this fall so we’ll see. As far as location/size, I don’t know too many details. I know it was maybe 4cm into the tissue and the doctor said it was “massive.” I’ve no actual idea of how big it was though. Maybe I can ask when I see him next.

So that’s me. It took me a while to get on here, but better late than never.

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Stuart

Welcome! You’ve been through the mill at a very young age, so kudos to you for handling it so well. 4cm is at least medium sized and in or near your cerebellum is a complex area, so it sounds like you’re doing remarkably. Really: remarkably. Keep up the great recovery.

We do have a number of people with AVMs in or near their cerebellum. Look down the category menu on the left of the home page and you’ll find an area under Types Of AVM with conversations with people with cerebellum AVMs. A lot of people in your situation have been advised that an operation is not feasible or not recommended, so you’re a rare person to have an op in that space.

I hope you get the support and comradeship you’re looking for and can help others in a similar situation to you.

It’s great to have you on board!

Very best wishes

Richard

Hi there Stuart, it seems that we have a lot in common. I too had a bleed on my cerebellum, but in December of 2017. They tried to embolise it but I started hemorrhaging so they did a craniotomy. I love is South Carolina, but I’m a fifty six year old woman.
I’m glad to hear you are recovering well. I still have balance a dizziness issues, as well as ataxia in my left arm. Some days I feel like things are going well and I’m so grateful for the recovery I’ve had, but other days I’m angry and upset that things aren’t better. It’s so unfair to go from very healthy to dealing with all of this.
Hope your scans go well. They also told me that got it all right after the surgery and that is what the angiogram showed
Carol

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Hi Stuart and welcome! You are doing great forsure and hope hose scans are all good news! I had a bleed back in May 2016, left temporal AVM. I had gamma knife and my last angio in Fenruary 2019 was the news I had been waiting for. Great you’re here! Take Care, John.

Welcome to the family Stuart and keep us posted on your progression… God bless!