trying again- neuropace complications
hey team, i also really appreciate my neuropace device- it has stopped my seizures almost entirely.
i feel like there have simultaneously been complications that are not being attended to (aka post-op i went to the er for uncontrollable vomitting and limb pain after moving my head in the shower) it was only once, after the surgery.
there is very little out there about how people are feeling, post-op. and so little support around experience— even if we have seizure reduction.
i want to be a voice, and also ask if anyone else may have had anything similar. i am part of the study for generalized epilepsy, implant in thalamus.
i was an ice skater for many years, and have hit my head a lot (?? epilepsy and skating. so it’s weird for anyone to suggest those symptoms coming from moving my head and neck incorrectly is from showering) — the study is kind of making me feel at fault on this one… but anyone w grand mals has ‘moved their neck weird’ and so has a figure skater. so showering is really not the cause, in my mind. i think this surgery did do something in my spine
it’s gotten less frequent and now is not happening… but shouldn’t someone notice that this never happened until surg? and the further i got from it, they reduced and stopped
anyone else anywhere? or just need to vent i guess