Patient Comments: Locked-in Syndrome - Causes

Question:

What was the cause of your locked-in syndrome? Submit Your Comment

Comment from: budda, 45-54 Female (Caregiver) Published: May 18

My wife was diagnosed with a brain tumor 5 years ago (glioblastoma) and was not supposed to live long back then as per the doctor. Today (5 years later) she is still alive but has been on hospice for 3 years now and shows no declining. I am wondering about the chance that she was misdiagnosed? For a patient with this type of tumor, there is no cure and not even long left to live if the doctor was right in the beginning. My wife now stares into space and can no longer even feed herself or talk so I have to guess what she wants and when. She sometimes spits out drinks when trying to swallow and after adding thickener in the juice, it is easier for her to swallow but some juices (like Ensure) she drinks without thickener. I wonder if this has anything to do with locked in syndrome.

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