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Some symptoms worsening, others getting better

by Jason
(Boston, Ma, USA)

Question: My 72 year old mom had a stroke 9 days ago. It was an anuerysm that had leaked. The night it happened she was pretty bad, could barely move her left side, couldn't find words and was speaking in jibberish. Over the next 2 to 5 days we saw amazing improvements that gave us all hope. Her speaking got much better, almost normal most of the time. She had no issues finding words or remembering things. She even started walking with the help of a walker around the ICU. On day 5 things seemed different, she started losing words more and more, started to forget her birthday which she knew the first few days very easily. She now shows inability to read, it's sort of like a 4 year old trying to read, but she tries to read backwards from the last letter and gets the letters wrong. She's also losing things in her vision, usually to her left. This has been present since the first night and seems to only improved very very slightly. However her ability to move her left side has improved tremendously. She can move and raise her arm and leg quickly and easily (with the exception of her hand/fingers). Speaking with her doctor just returns "this is normal in stroke patients" but we don't feel they've noticed the decline in some areas as much as we have even after explaining it fully.

My question is, do some symptoms start to get better but then get worse before they get better again? It seems odd to us and is very frustrating for us and her. We know it takes time but why would she show vast improvements in speech and cognitive ability right off the bat, only to have this part regress? We can't have her consult her MD or neurologists, they don't have answers. We're wondering if this is normal in recovery even this early. If not we want to take precautions immediately to get her better care.

Answer:There are many reasons that cognition could become worse. There could be further leaking (even after a repair), increased swelling in the brain, seizures, changes due to new meds administered, development of urinary tract infections or UTIs (common in the hospital especially if on a catheter), and dehydration to name a few. Since you are family and are with your mother more and are going to be more observant of changes, I would not back down in your quest for answers. Obviously scans of the brain would let you know if there is swelling or leaks, bloodwork would help indicate if there is an infection/dehydration, urine samples would help identify UTI. You can also inquire about seizure risk. If you feel that there has been obvious changes, it is within your rights to talk to the MDs (sometimes the PCP or generalist might be best if you are not getting anywhere with the neurologist, and you want to look at possible multiple causes rather than just neurological reasons). Just let them know that you would like all these areas looked at just to be sure. It's possible that they have already addressed any of these issues since they typically would be doing bloodwork or scans, and they just need to explain the results to you. If they have found nothing unusual after the date of change, then you can be satisfied with their explanation of it just being normal for stroke, but if they have not looked at other possible causes of a change in status, then it would be prudent to do so. I personally think that one of the biggest problems with hospital care is the medical staff not taking into consideration the observations of the family. Yes, many families are not trained in medical care and may not understand what is going on, but families are quite astute at noticing changes which should always be taken into consideration in my opinion, as I have seen many missed diagnoses and lack of appropriate treatment for this very reason.

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