Hospitalized and hopeless

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Hospitalized and hopeless

Postby ajohnson93 » Sat Aug 25, 2018 2:05 am

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.
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Re: Hospitalized and hopeless

Postby Elizabeth » Sat Aug 25, 2018 5:56 pm


I am so sorry you guys are going through this. It can be very hard and scary. Depression is easily a side effect of the situation and changes in brain chemistry. Please reach out to the doctors and try to get him addressed and treated for depression if needed. While depression is a super common "side effect" of all of presents a great risk to recovery and quality of life. I would probably try to bring in a therapist that is familiar with strokes and brain injuries, getting the right help asap can make a huge difference. If you were in LA, I would try to come in and cheer you all on. I'm too far from NY, sorry. You can read my blog, which details my story and there are lots of other patient stories on the main AA website. You are not alone, and recovery is possible. Get treatment for depression, work hard in rehab, stay positive!Sending lots of love!!
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery.
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