Hello, I’m new here and figured I’d introduce myself. My name’s Erin, I’m 28 years old and living in the States.
In early 2022, after experiencing worsening migraines with right-sided vision loss (which I have had since I was about 8-9 years old), I had a CT scan done that revealed a grade 3 AVM in my left parietal lobe. I’m fortunate to have not had any bleeds or ruptures, but of course now comes treatment options.
Doctors didn’t want to operate due to high risks of visual deficits, so I went with gamma knife radiation. Quite the experience! That was last August. Follow up scans since then have revealed healing has been going quickly, which is good.
Fast forward to this summer, and I’ve now been dealing with the side effects of radiation. I ended up in the ER at the end of May with some vision loss that wouldn’t go away, as well as a very intense headache and disorientation. Scans showed no bleeds, but definite swelling that doctors believe is causing the vision loss. I was prescribed a 6 week round of decadron to bring down the swelling.
Unfortunately, follow up scans revealed that the swelling had actually gotten worse. I was prescribed trental and vitamin E, but after a couple of weeks, ended up back in the hospital with more significant vision loss, a very intense headache, confusion, nausea, and vomiting. Scans again showed no bleeds (thankful for that), however did show signs of radiation necrosis. I’m currently back on another round of decadron, and have discussed next options like Avastin with my doctor if it comes to that.
All of that to say, it’s been an adventure, and has been particularly overwhelming recently. Lots to take in, while also dealing with the effects of the swelling and of the steroids. Just wanted to say hello, and thanks to everyone who has shared their stories here so far.