Matt and I figured we'd start this site to keep you good people updated about what's happening with Maya. Here's a little history. Maya fell while climbing in Schenley Park in 2020. She hit the left side of her head on a rock, which threw her brain against the right side of her skull, resulting in a subdural hematoma, several skull fractures and three brain bleeds. At first, she seemed to be having a miraculous recovery, but three months later she developed a seizure disorder. For about a year and a half, the seizures were full-on, tonic clonic (grand mal) convulsive seizures. These generally put Maya in the hospital, intubated in the ICU, for days at a time. That was a terrible, traumatizing time.
We tried a bunch of medications: kepra, zonisimide, lamictal, vimpat, briviact. Eventually, the tonic clonic seizures came to an end, replaced with focal aware seizures: smaller episodes characterized by intense feelings of fear and deja vu. Maya does not lose consciousness during these seizures, but they wipe her out and scramble her memory and cognitive processing. This has been somewhat less traumatic but very exhausting and discouraging.
After meh experiences with many of Maya's doctors and an awful experience with one particular critical care doc, we finally found a good care team, led by Dr. Page Pennell, chair of neurology at Pitt. She determined that, like more than a quarter of epilepsy patients, Maya's seizures were medically refractory, i.e., can't be controlled by medications. She recommended surgery. So that's where we are now...Details and updates in the journal entries to come.
Quick update on Maya. Her seizure data from November showed a 66% reduction of seizures relative to last May. She's still seizing (24 seizures in November) so we don't always FEEL the difference, particularly in a bad week, but those numbers are really encouraging! And there's still plenty of room to move on the zapper treatments, which are still at a lowish dose. All in all: good news.
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