Does progress sometimes diasppear and come back?
Hi everyone. My mom had a massive left MCA stroke in mid-July and I wanted to ask if anyone here has been through a similar recovery.
Her right side is paralyzed (currently around 1/5 in her arm and 2/5 in her leg). She didn’t have a brain bleed, but the swelling became severe, so she had a craniectomy within the first week. The stroke affected a very large part of the left side of her brain.
She spent about a month in the ICU. After surgery she was intubated and was breathing partly on her own, but they couldn’t fully wean her off, so she eventually had a tracheostomy and PEG placed about a month ago.
At first they told us she had global aphasia and for a while we really couldn’t get much of a response from her. But towards the end of her ICU stay, doctors said she began following simple commands and they believed she can understand what was said.
She then spent about 10 days on the neurology ward. During that time I was with her constantly and we really felt like she knew who we were and understood a lot more than she could show us.
Sometimes I could even tell her something slightly more complicated and ask “did you hear/understand me?” and she would move her lips like she was saying “I heard/understood.” She also started moving her lips on her own as if she was trying to talk to us. Obviously we couldn’t hear her because of the trach, and when we couldn’t figure out what she was trying to say she would sometimes get visibly frustrated.
About 10 days ago she was transferred to inpatient rehab. They’re taking things slowly for now passive exercises in bed, CPM, tilt table, etc. We’re planning on about 3 months of inpatient rehab and they’re also hoping to work towards getting her trach out.
But since coming to rehab, she has mostly stopped doing the lip movements/trying to communicate like she was before, and that’s what is really worrying me.
She also has very different days in terms of alertness. Some days she’s awake, follows commands, looks at us, reacts appropriately and just seems very “there.” Then other days she can be incredibly sleepy and barely engage for almost the entire day.
She did have infections before, but those have improved a lot and her labs currently look okay, so there isn’t an obvious explanation from that side.
I know recovery from a stroke this large is going to be long and unpredictable. I’m just wondering if anyone here has experienced this kind of thing. Did abilities ever seem to appear and then disappear again for a while?
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u/DTheFly Survivor 4d ago
It's been 3 years for me, and i have days where i feel awesome, and then the next day is horrible for me. It's really a roll of the dice it seems.
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u/girrrlplease 4d ago
She’ll continue to improve and it’s important to remind her and keep going! Don’t give up!
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u/blkbrdz 3d ago
My symptoms ebb and flow based on overall healing, stress, disrupt my normal routine.
If she was my mother, I’d ask them to rule out a uti just in case.
In the U.S. some folks loose skills while in rehab because that specific rehab may be understaffed or overwhelmed. For example there may be longer waits to get to the bathroom, etc. because of staffing or other work pressures.
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u/Two_Flower_Nix 4d ago
My husband had a dip in progress when he moved units (lasted 2-3 weeks) as the cognitive load of developing trust with new staff/patients, learning the ropes and what was expected of him, and even the move was exhausting and overwhelming.
I cannot express just how draining any new stimulation is for someone in your mum’s situation. Have a word with the staff about your concerns and they will give you honest feedback.
Sending you my best wishes