The surgical epilepsy board met to discuss me. They are not convinced that I have MHS, but are sure that my hippocampus is damaged. This gives them little hope on controlling my seizures medicinally. I spoke with my neuro who gave some names for a second opinion, which I scheduled at NYU for next month. In the meantime the idea of going forward with the pre-surgerical tests hang over my head like a dark cloud. I am scheduled for neuro-psy testing because it is non-invasive. I am on the fence about the WADA test as it sounds scary and has risks. Part of me is intrigued about this test, but I am still not looking forward to it. The team is confident that my hippocampus is so damaged that it is not doing much for me so the WADA is not even necessary. But I need to do it for me. If the WADA shows that much of memory is on the right side, then surgery as an option is off the table for me. I do not care if it is against what the doctors say.
Two weeks ago I started school. This post-Masters program is something I wanted to do for over a year. I was so nervous starting because I did not know if my brain could handle the work. I was even more nervous when surgery was brought up again. I am scared that this brain tumor will reck yet another plan. I feel like I cannot make any plans anymore, even small ones. It is like my life is so unpredictable that I do not want to be disappointed by making plans that fall though. Yet I get upset that I do not get to do much because I cannot make plans. It hurts either way.
So far I have had very good seizure control on my new medication, which I am ecstatic about. This make surgery look much less needed then even a few weeks ago. I feel like I am stuck and I cannot imagine how I can make an education decision. In the meantime I go through the motions of finding out answers, but right now I do not see any need to move further with treatment.
No comments:
Post a Comment