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AVM Survivors Network

Hey guys

so my name is kevin and heres my story.

on nov 1st 2018 i was sitting on my couch and i felt a pop in my head but i felt like two knives stabbed me in the bottom of my skull at the same time and started turning. but the sensation went away after about 45 seconds. i carried on about my day thinking it was just a weird way for a migraine to start. so two days later the migraine is still raging, nothing is taking the pain down at all. i go over to a friends house that friday night with my girlfriend to have dinner and spend some time with them. we get back to my house later that night and ive thrown up on the way home. i called out of work for the next day which i never do, i feel like im on deaths door step so we go to the hospital. they give me the migraine cocktail which makes me feel better, im walking around and cutting up when i leave, i feel back to my normal self… that was at 3am. by 9am the morning i was throwing up again and back at the hospital, so they do a CT scan on me. i walk back to the room, lay down and do the scan and walk back. as they are closing the curtain the doctor throws it open and says “theres blood on your brain you may habe to have brain surgery… are you ok” which i respond with a do you think im ok after hearing this. so they take me by ambulance to the main hospital downtown and im admitted to ICU. i feel sorta ok so im in a playful mood and cutting up, trying to make light of the situation. so saturday nigjt something switched and the pain became unbearable, i really dont remember anything from sun-tues. so thurs they move me to a normal room because the blood had started to resorb. so im released a few days later with no help from the doctors really. so i make an appointment with a neuorsergeon at emory in atlanta. the day finally comes when i meet with him still not knowing what is going on. so we talk about what happened and i told him i get real bad ocular migraines, he stopped and though for a second and said well you may have whats called an AVM. so after explaining what that was and the steps to figure out if its what i had. so we set my angiogram up for dec 26th. my AVM is right by the thalamus gland, so he explained the risks of surgery and then told me about gamma knife radiation and set me up with a team to do that at a different hospital in atlanta. i did the gamma knive and here we are today.

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Are you waiting on another angiogram?

yea, i have one more angiogram in the future. the mri wont show if the vessel is gone, ill know more when i see my doctor in june

Kevin,

Hi! I’m sorry, I’ve not been paying attention to new posts :grimacing: and I’m sorry you’ve got a diagnosis like us but it’s great you got through your appointments as well as you did!

It’s a very worrying thing to get a diagnosis, as you say and any of the options for treatment are worrying, too, so it’s great we can hang out together and help others through their difficult time.

It’s great to have you join us!

Best wishes,

Richard

finding out i had my avm was thebeasy part, being in the hospital for a week and the doctors in my townnot knowing what was going on was the hard part. i remember at one point them telling me if the swelling didnt go down the were going to have to drill a hole in my skull to release the pressure and i begged them to do it. that was hard part.

im just glad to be alive

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