AVM 21 year old from Kansas U.S.A. in left thalamus

Hello everyone! Welcome to the site. Let’s start off with an introduction of me and how I became a member on here. Well, three weeks ago (to the day) I was called with the shocking news that I have an arteriovenous malformation in the left thalamus that extends into the left basal ganglia and posterior limb of the internal capsule, with slight extension into the posterior horn of the left lateral ventricle as well. The extent of this vascular malformation measures 4.5 x 4.5 x 5.8 cm. I have had this my entire life and it has progressively grown. I’m not sure of the rate it’s grown, however, I am sure that eating healthy and exercising has probably put strain on my mental focus. Experiencing forgetfulness, confusion, anxiety, and most recently, I was diagnosed with depression and hospitalized last April for 4 days in the psychiatric unit. I didn’t necessarily enjoy that experience but I have learned from it. That’s the meaning of life right? I didn’t like the medication the medical professionals gave me. I was sleeping for 12-13 hours a day. I felt like a zombie honestly. Crying most days multiple times a day was exhausting. I had no energy left and it was only 12pm. I stopped doing the things I love. I knew that something was wrong. In July/August of 2017, I started having muscle twitches. I knew it was due to stress. I had graduated college in May of 2017 and even though I smiled for my photo and it as a great time, I honestly knew that something was wrong. Nothing was making me happy. They had re prescribed me antidepressans. I went back to the doctor and complained that I couldn’t hear very well so they cleaned out my ears. They started with my right ear and then moved to my left. That seemed to hurt significantly more than my right ear. I finally, after going to many doctors, and gaining 20-25lbs to prove to my mom that weight wasn’t the issue, I was diagnosed with this AVM. Ever since I was little, 21 was my lucky number, I do not know why but it is. Always has been always will be. I’m not sure, however, that my muscle twitches are related. Thank you for reading my story.

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Welcome! It’s great you’re here with us, thanks for joining! You’ve had quite a go of it. I have an AVM in my left temporal that I had gamma knife on November 2016. It was diagnosed in May 2016 due to a bleed. You’re fairly early in our world of trying to understand these things and what, if anything, we do about them. Feel free to ask away on here, lots of varied experiences and people willing to share. Take Care, John

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Hi eickhoffl21! I also have a avm in left thalamus, I totally understand what you say when you knew something wasn´t right…I felt weird for some months before the rupture but couldn´t exactly say what it was…If you want to ask me something feel free!

Hello,
Wow that’s similar to mine! Yet, mine hasn’t ruptured yet. What were some of your symptoms? How lucky my did it take to recover? Only reason I’m asking is they’re debating towards using gamma knife to shrink it or a proton beam. Would you mind sharing?
Thank you!

Lilly Eickhoff

Rupture will make 2 years in March and GammaKnife did 1 year in December…I don´t know at this moment wich is causing my deficits at the moment (numbness and pain in the whole right side of my body) Before the rupture I didn´t had phisical syntoms …it was just a not feeling me normal and reactions that weren´t mine…

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I hope you have a speedy recovery and I’ll keep you in my prayers. Thank you for sharing.

Lilly Eickhoff

Thanks :slight_smile: everything will be fine with you too!