Im from Houston TX! Had a brain AVM rupture in 2015 i believe i was 18 or so. I had vision loss (homonymous hemianopia) i believe it was due to me waiting too long to go to the hospital… Me being stubborn i waited it out thinking it would eventually go away. Ended up going to the hospital only to not be taken seriously, they kept asking if i was pregnant, as if because im a female thats the only thing it could be. I was vomiting a lot, had the worst head pain of my life, and couldn’t walk correctly at that point. All they did was send me home with nausea medication. We all know how serious a ruptured AVM can be, and waiting too long can result in death. So thank goodness my mom took me back to the hospital right away and refused to leave until they found out what i had. They ended up sending me to another hospital (Ben Taub Hospital) because the one i went to didn’t have the proper equipment or something.
I think im fine now, just not being able to see like i once used to can be frustrating… i tend to run into things or people and can’t get a license to drive now. I do get headaches monthly or at least once every 2 weeks. I also have a bump which i think is the screw or whatever they used to put my skull back together, and if i lay my head on the pillow a certain way it hurts… i get paranoid to hit or touch it too much.
Also, anyone else here have Homonymous Hemianopia?? If so whats it like for you?
Welcome to our group, it’s great you have joined us. Wow, a rough start to your AVM journey, I sure don’t like to see when we are not taken seriously by some in the medical world. I don’t have Homonymous Hemianopia and didn’t experience vision loss with my rupture. I had gamma knife for mine so I’m not much help experience wise for you! We have a ton of experience here so I think some folks will join in, not a lot someone her hasn’t experienced. We often have some commonalities, but are all different. Once again, welcome! Take Care, JOhn.
Hi @Alexandra.96! Welcome! Hope you’re not getting too much of that fluffy white stuff. I know Texas isn’t typically supposed to be a winter wonderland. My wife’s family is from Texas and seeing the pictures it certainly looks to be a little out of the ordinary! I wanted to respond to your question “Also, anyone else here have Homonymous Hemianopia??” Right here! I do. I’ve been to the local ophthalmologist, who referred me to the local neurophthamologist. Who after tests and even a scan, referred me to the Duke neuroopthamologist. After scan at Duke they’ve worked with me for a number of months. After getting an MRI with contrast, CT scan, and a wrist angiogram, they basically (so far as I understand) said that it was caused by a stroke in 2017 which caused my vision to cut out and stay cut (which is why the homonymous hemianopia). Now again, I’m no doc and that is only my understanding of what’s been explained to me. I hope regardless that you can get some answers and hopefully some tools to help you mitigate this aftereffect. BTW, Duke opthomology and neuroopthamology was fantastic, the whole group. Of course that is one man’s understanding of what doctors said so always go with doctor recommendations and not some blind guy (right here)! Blessings as you continue!
have HH from my rupture. 5 years later I still can’t drive but I tend to trip over and walk into things a little less often… took a long time to scan my surroundings thoroughly so I wasn’t a bull in a China shop…
I am pretty sure the bump on your head is the screw that they used to hold your skull back together with, eventually scar tissue will grow over it underneath the skin.
I had to purchase a computer system from Germany called Novavision. It took seven months therapy though to fix me.