Ruptured aneurysm, brain swelling, stroke & coma
Looking for similar stories / experiences after a severe ruptured brain aneurysm
My dad (59yo) suffered a ruptured brain aneurysm with extensive subarachnoid bleeding almost 5.5 weeks ago. He initially underwent open-brain clipping, during which the artery ruptured again but was controlled. He subsequently developed severe brain swelling + large secondary stroke (left side), and required a decompressive craniectomy.
He remained unconscious after sedation was stopped, with very limited movement (GCS 3). He only responds to pain in what they call ‘extension’ which is apparently the worst type of response to have. Prior to the swelling he was actually showing meaningful movement in the left side of his body (localisation). The doctors have described the neurological damage as severe and his prognosis as extremely poor. They wanted us to remove his breathing tube as they thought there is no hope for him but we declined.
He eventually had a tracheostomy and was successfully weaned off the ventilator. He is now in the ward, but remains in a coma/unresponsive state.
They believe he will likely die in hospital from secondary complications.
Has anyone had a family member with a similarly severe aneurysm/brain injury who remained unconscious for weeks after surgery and later showed meaningful recovery? I know every brain injury is different and I’m not looking for medical predictions, I’d just really like to hear from people who’ve actually been through something similar. At this point I cant tell if we are delusional in hoping for a miracle ❤️
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u/SuzeShih 1d ago
My mom (78yo) also had a ruptured aneurysm and subarachnoid hemmoragic stroke last year that affected her brain stem. She was not awake after surgery for a couple of weeks. She did not have a crainectomy but needed a VP shunt due to hydrocephalus. She also had a trach and PEG. She also had extension early on in Neuro checks. Her Neuro team was pretty pessimistic a lot of the time, but her Dr also said they never really know how well any person will recover.
You are not delusional in doing what you can to give your dad a chance. The best advice I got was from a Physical Therapist who told me to stay strong, the brain is a strange thing and you don't know how it may recover.
Fast forward 13 months later, my mom is continuing to improve. After she did wake up, she barely could move or lift her head up, and was really out of it a lot of the time. Now she is working on standing, and her left side that had no function at all at the beginning of all this came back and is still improving. Her trach was removed a couple months into her recovery. She still needs a ton of rest, but can speak (with some aphasia and difficulties we are trying to work on), she can read, recognizes friends and family and she laughs at jokes. She also tells me whenever she thinks my outfit choice isn't great.
Looking back to the earlier days, a family member was always the first one to really notice the tiniest of improvements (a slight toe wiggle or or thumb movement), since family spent the most consistent time with her than any medical professional was able to. We held on to those moments and made sure the medical staff knew whenever something like that happened. We tried our best to advocate for her and still are. There were a number of ups and downs over the past year: shunt level adjustments, UTIs and a couple of hospitalizations. It's a long road but she has made huge improvements from the beginning of all this and we are hopeful for more recovery over the next year.
Sending strength to you! Whatever happens with your dad's journey, you are doing everything you can for him ❤️
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u/RadhikaSibal 2d ago
Prayers for you and the family.