Hello, I’m glad to have found this place. My heart is broken for my son. He’s a 16 year old hockey player, Jr Firefighter, and in trade school to be an electrician. On Jan 22 he was knocked out at a hockey game. We got him off the ice and he siezed, had one fixed and dilated pupil, and was taken by ambulance to the children’s hospital. They did a CT scan and almost immediately started talking about neurosurgery, but no one told us why. I assumed he had a bleed from the way his head hit the ice after taking an elbow to the chin, and that they were talking neurosurgery to evacuate a clot or do intracranial pressure monitoring. Then he went for another CT, and a couple MRI’s. Finally from the things they were saying, I figured it out and asked them the next morning if he had an AVM. They were shocked that I knew what one was until they realized I’m also a registered nurse. He spent 4 days in the Peds ICU, had more MRI’s, a cerebral angiogram, then was discharged to home with zero follow up, a massive concussion, an AVM that some doctors say had a bleed and some say it didn’t. We took him to Boston Children’s for a functional MRI, and just Friday found out that because the AVM sits right in the middle of the motor strip for his right leg and hand, neurosurgery wants nothing to do with operating due to the risk of paralyzing his leg and hand. Thursday they are meeting with the Proton Beam/Rad Onc to discuss the possibility of radiation, but the doc has pretty much prepared me to accept that no one wants to do anything with his AVM because no one wants to paralyze him.
My heart is broken for him though because he will never play hockey again. He will never be a firefighter, and because he’s missed half of the quarter of school he may not be able to continue in his trade school. This AVM has so disrupted his life that I almost wish we still didn’t know about it. Our community has been very supportive. We live in a small town and he is a well loved kid. He’s been on tv, I’ve been interviewed on the radio, his story has been in the newspaper. We are so lucky to have so much community support, but none of it gives him back the things he loves. I have many questions. Reading some of your stories gives me hope. Thanks for letting me in. Oh, my name is Dawnn.