Have people who had EEGs been actually talked through the results?
I was diagnosed in december and ever since then every appointment we (as in me and my parents) have been asking for the EEG results and pushing to have it so we can take atleast have the results for someone to translate it but we have just gotten a load of excuses and random babble that isn’t getting us anywhere.
At the appointment where the neurologist told me I had epilepsy she just told me that the results came back and not that they showed clear abnormal brain activity -which they did. And I found that out later on when I had a home visit from someone from the hospital (I think she was an epilepsy nurse or smt- but for the child sector so she only really cares about transferring me over to the adult side of the hospital) and she told us that it was irregular.
The EEG was a mix of lots of different things like breathing and flashing lights and stuff so wouldn’t the activity be shown on the different parts of the session? or if they don’t want to take me through the EEG then can’t they give us the results so they we can get someone else to translate how much activity was going on. I’ve ask multiple times those questions and everyone’s all like ‘Well I don’t even understand EEGs myself so you wouldn’t understand much from them’ ‘Oh it’s just so difficult to get the actual results because the system…..’ ‘they’d probably would have told you if it was the flashing lights that triggered the epileptic activity’ ‘does it really matter?’ and just pure nonsense and filler words.
It’s just very frustrating and it feels like they don’t care in the slightest so I came here to actually see if I’m just being annoying or if people have had a walk through of the EEG and what triggered what if anything was triggered.