One of the hardest things about this entire experience with Ben’s seizures has been the feeling that we need to “prove” to the doctors that Ben is having seizures by reproducing them in the artificial environment of the EMU. Because Ben’s seizures aren’t convulsive in nature and affect his behavior and cognition more than anything else, there has been a huge tendency for Ben to wonder, “am I really having seizures?” The doctors have assured us that there are people who simply don’t know when they are having seizures. Ben falls into this category. His seizures impair his consciousness and his memory, so he can’t tell when he’s having them.
The only method of confirming Ben’s diagnosis of seizures is to record these activities on an EEG (and on video). So not only was Ben having to live with this elusive yet debilitating disease, but we felt like he was having to prove to the doctors that he actually had it.
Now Ben has been in the hospital for almost two weeks, and until yesterday he hadn’t had any seizures. Again, Ben felt such incredible pressure to “perform.” What an huge responsibility for someone like Ben with a type A personality! He has willingly and humbly submitted to surgery and monitoring and loss of mobility (it really is a very small hospital room), and on top of all of that he has all of this pressure to have seizures…events that he can neither produce nor stop at will.
Yesterday Ben experienced two small auras…seizures that are limited to one small portion of his brain. He’s had these experiences in the hospital before, but they have never registered on the EEG. So we went to bed disheartened that he hadn’t experienced any seizures. This morning, however, we learned that the doctors learned a lot from these auras and from some other events that occurred during Ben’s sleep. It definitely appears that the seizures are beginning in both hippocampi. Of the 3 recorded events so far, 2 started on the left side and one started on the right. So that would mean that Ben is not a candidate for further surgery.
Ben has continued to have auras throughout the day today. We are waiting for his doctor to come in and sum up the findings and give us more information, as well as help us formulate a plan for discharge.
In the meantime, I think Ben was surprised at how validated he felt to have the auras register on the EEG as seizure activity. There is always a small portion of Ben’s mind that wonders, “Did that really just happen? Was that really a seizure?” Having confirmation from the doctors that the activity registered on the EEG and that it was sufficient information was surprisingly reassuring for Ben.
Now we are eager to come home. Please pray that Ben would keep up his spirits as the doctors begin what may be a lengthy process to get him back on medication, remove the electrodes, and send him home.
I apologize if these entries are getting longer. Ben said that they are like this hospital stay.