Hey everyone, I’m Steven, a 21 year old psychology student here from San Francisco! I have a 3.2 cm AVM in my Right Basal Ganglia.
Where do I start? I was diagnosed February 26th 2019 by complete accident. It all started when I was working and I felt quiet off. I had put in my 2 weeks and was a little nervous so I thought it was nervousness until maybe mid shift I started noticing my left hand tingling and twitching. Suddenly I had trouble understanding a customer in front of me, then I had trouble talking. My coworker took over and I suddenly had trouble walking, I caught myself on the counter and rested. My coworkers told me to leave so I did. I was 19 at the time. I told my mom what had happened and she said I had nothing. I agreed with her but something in my gut told me to just go to the ER, so I did. There the ER docs were a little hesitant to take a CT scan of my Brain, they said the likelyhood of me having anything was slim considering I was fine when I arrived. They took it, they saw something, they took a CT with contrast and there it was, my AVM. I think this is where the doctors really messed up and triggered my Health Anxiety. They explained to me that I had an Brain AVM and that I was going to be Transferred to UCSF. My mom called my dad (Which is 100% against medicine) and he storms in and says that they’re not touching my brain. The doctor then precedes to say that I can die at any moment because they don’t know if its bleeding. I cried. I was terrified. Ironically enough, growing up, my biggest fear was having a random Stroke and dying. I was transferred to UCSF and there, they did an angiogram, an MRI and they told me I didn’t have a Bleed, but that my AVM was too deep for them to do brain surgery, that my best option was Gamma Knife Radiation.
My AVM diagnosis changed my life, but sadly in a bad way. I became extremely depressed, saddened. I’ve always been a really happy person, lifting everyone around me and making them laugh, but this diagnosis got to me. Why me I kept asking, what did I do wrong? What made things even worse is the fact that I had no support from my parents. My dad kept telling me to do nothing, that the doctors didn’t know what they were talking about and that I will be fine without treatment. He even said “I wish I had kept you home so you wouldn’t have found out about your AVM.” My mom was just worried and didn’t want anything bad to happen to me, so she kinda acted like nothing happened. I chose to go through with the Radiation Treatment. I had 2 sessions of Radiation, 1 in July 2019 and the other in November 2019. On February 26th 2020, exactly 1 year from when I was diagnosed with my Brain AVM, I was hospitalized for Cerebral Edema and then sent home with no steroids at the time. The headaches continued so they prescribed me Dexamethasone and I’ve had a terrible time with it. I hate being on steroids, my body has physical changed, I’ve lost 17 pounds, mostly muscle and bone, and I’ve gained a lot of fat. I’m nervous about the long term side effects of Dex. like Osteoporosis Considering I was already Vitamin D Deficient or Adrenal Insufficiency. My parents haven’t been very helpful either. I’ve been called an addict my to my steroids and I’ve been regretting lately getting my radiation treatment as well. One part of my AVM has shrunk around 25% and its been 9 months and thats the thing thats keeping me going at this point. The most recent part of the AVM hasn’t changed much. I hope I get off Dexamethasone relatively okay and I hope I turn out okay! I wanna do so much in life like open a free therapy clinic for the low income community here in my city!
I’m sorry this is a bit long, I’ve been alone in this for a while and I hope I’m welcomed and some of you guys can relate to me!
