Hello my name is Amanda Johnson. My boyfriend Ryan was diagnosed with cavernous angioma when he was young, had two removed over the course of 21ish years and had two remaining as of 2013. They were never supposed to interfere with his life after his second surgery. What they didn't know is there was one at his brainstem. To summarize I am writing this from NY where Ryan is recovering from a right poutine hemorrhage at his brainstem. He had surgery to remove the clot on 8/21/18 and it went well. He is cognitive, however he has a trache and a feeding tube in his stomach. He is unable to talk, move his entire left side, and has some double vision.
Ryan is a fighter, he was admitted on July 28th and hasn't stopped fighting since. He managed to regain some of his strength before surgery. We even had countless hours of laughter and smiles. However today has rendered me helpless. I asked him if he felt depressed and he gave me a thumbs up which means yes. I promised him I would try to find someone who has had something similar happen to them so he doesn't feel so alone. He is doing even better than expected after surgery with minor setbacks due to secretions with his trach. I am looking for anyone in the NY area to come and meet him and share their story for encouragement. If you know someone or are someone who has suffered an angioma bleed to this extent please contact me. He will be in acute rehab next week and needs a boost to keep him going. Thank you.