@santosha Get comfortable this may take a while. During my programming appointment, the doctor was very helpful in showing me the graphs indicating seizure activity that also came with timestamps and duration. In addition to that, they indicated that the majority of my seizures were originating on the left side, with a small percentage on the right.
When I started this journey, my seizures originated on the right and gravitated to the left. So they have spread. It appears the majority of my seizures happen during my sleep at night or when I'm tired, and I now understand why I don't feel like I'm getting much rest. They do label them as long seizures. I will be starting briviact tomorrow and we will see if it is effective without turning me into an angry person.
The initial programming was done and it is not something you feel or are aware of happening. I have been very frustrated lately at the confusion in my mind. A mind that sometimes feels full of confetti that i'm trying to see through. I'm trying very hard to be patient with myself. I did send a message to both my surgeon and my neurologist, asking that they share it with the team for future reference. I suggested the notepad I had spoken of earlier. I also suggested that their surgical patients be contacted once a week for the first three weeks to have their questions answered and concerns dealt with so they wouldn't just sit and worry.
I suggested that a neuropsychologist be a part of the team because of that confusion that you go through as your brain heals. It's not a quick process, and it would be helpful to know you're not going nuts. I think it's also important pre surgery for the surgeon to explain to you what to expect. It will never be the same for everybody but you'll at least know that there will be some confusion and issues with your thought process as your brain heals from the trauma, it's been through. It will be a long road forward but at least it is forward.