Hi, I don’t know if this is allowed. My sister was 11 and passed in 2014 due to an AVM we didn’t know about. I was 14 at the time. It was a Saturday evening when she got a headache, and that’s all we thought it was. The next day she was just very sleepy and started throwing up that night. We took her to the doctors the next morning and she passed 20 minutes after we got there. I had no idea that something like this could happen when I was that age. My sister was perfectly healthy and never complained of any pain.
I know AVM’s are rare, even rarer in the brain stem area, and even rarer for it to enlarge and not rupture. That was her case, it didn’t rupture it just started swelling around the brain stem area. Neither one of my parents can tell me exactly what happened and neither one have the autopsy report so I can’t tell you where it was at exactly, just that it enlarged and was near the brain stem, and caused fluid build up on her brain. The what ifs eat me alive and I have not found a similar story to hers. I’ve only ever seen ruptures. I guess my post is to see if anyone has been through something similar and survived or lost a loved one to something similar. I just wish I knew better and was able to get her the help she needed maybe she would still be here today.
I am very sorry about your sister. I had a cerebellar AVM rupture in 2003, barely made it out alive. Beside the passing away part, my story is somewhat similar. My AVM ruptured behind my cerebellum. I went to bed as normal, and don’t remember anything after that except hearing the flat line and falling asleep. I was 32 when it happened. The doctors had to cut a hole in my skull around my brainstem area to relieve the pressure and access the clot to get it out of me. Mine happened in December of 2003. I was living in Connecticut at the time. A short while after I returned home, I couldn’t get the care that I needed and had to go live with my mom and stepdad in California. When I arrived at the airport in California, I was immediately taken to the hospital for an emergency procedure. Spinal fluid was building up in my neck area and around my brainstem. My natural flow of spinal fluid was broke, so the fluid got backed up in my neck, which put too much pressure on my brainstem. If not treated immediately, it would have killed me. Because of all the damage to my brain, it no longer regulated how much fluid was produced correctly, so it made too much fluid. The doctors had to stick needles into the back of my neck with no anesthesia to drain out the fluid, which was not pleasant. My doctors installed a shunt in my spine to better drain the fluid. I still have to keep an eye on it to this day because the tube could get clogged and fluid would start backing up in my neck again. It is just something I have to live with every day, knowing it could happen.
While I don’t know for sure what happened to your sister, are you sure it didn’t rupture? Blood is toxic to the brain. 90% of my life memories were erased because of the blood on my brain, and that’s why my body stopped regulating the spinal fluid correctly.
If your sister’s did not rupture, it would have put too much pressure on her brain stem. The brain stem is what controls all of the autonomic functions of our bodies, breathing, heartbeat, muscle movement, and so on. My doctors told me that if there is too much pressure on the brain stem, it would shut the body down (kill me).
I have brain scans somewhere that show all the damage. You should try to find out more information. You are allowed, or your parents are allowed to ask for all of the images the doctors took, and the autopsy report. It probably wasn’t the fluid build up on the brain alone when she passed away. It was probably the combination of the pressure on the brain and the brain stem.
Trust me, all the what ifs ran through my brain after it happened. I hope you can get some answers for your peace of mind.
That’s exactly what happened, there was too much pressure on her brain/brain stem which caused her organs to fail and go into sepsis. It didn’t bleed, there probably was irregular blood flow for sure. I have thought about requesting the autopsy but I don’t know if it’s something I can handle right now. Thank you for sharing with me, and I’m glad you were able to recover the best that you can. It helps to hear similar stories.
Welcome to our community, our standard line is that its great you found us, too bad there was a reason to look! My heart goes out to you, you are certainly among friends here. Michaelf, thank you! We have such a wide range of experiences, but the emotional and physical impact is difficult to quantify but you will find a better understanding here. I hope that makes sense, we see how so many are impacted by AVMs in so many different ways. Thanks for joining us. John