June 1, 2010 – post 3

First chat with Dr. Kotagal.

At about 1:45, Lisa was weighed in and handed a tablet computer with about 100 questions to answer about her recent seizure activity, its effect on her life, her relationship with family and friends, her schoolwork, etc. The tablet made an interesting round from Lisa to mom to dad and finally back to Lisa. We were disagreeing on whether to talk about her epilepsy since the beginning, just in the last six months or so, or her “worst case” events. The questions were typically phrased something like: “would you you say that your most severe seizures were: severe, very bad, bad, etc…?” Well, her “most severe” were life-threatening, but she hasn’t had one for at least a year. So how do you answer?

In any case, Dr. Kotagal entered while she was still finishing up. We caught up, found out he is involved with an Egyptian Ph.D. student doing some fascinating work that he’s hoping to continue with, things like that. He asked a lot of questions about recent symptoms, we did our best to let her answer instead of talking for her. He did a series of tests we’d seen before: ‘touch your nose, then my finger’, ‘hold your arms steady while I push them down’, ‘walk across the room’, others. Lisa was a trooper and went through them.

While she was talking about her symptoms was the first time I really had the hesitation come up – why are we here? She has an occasional hallucination, misses days of school because of double vision and nausea, has short blackouts, dizzy spells. Is Dr. Kotagal listening to this and thinking about the patients he’s seen who are having convulsions ten times a day and can barely function? Are we trying to get that last 5% improvement for her? Aren’t things as good as they’re going to get?

We talked with him about her last visit. There hadn’t been much activity, but they had measured some spikes, including one episode where she threw up, then crashed into postictal sleep. But, the point of origin wasn’t where we expected it to be. What did that mean?

Evidently, it’s not that unusual for this to happen. A seizure may originate in one location, but trigger other locations. There is still a lot we need to learn about Lisa’s brain before we can make any real decisions.

That seemed to be the big lesson of the day – we don’t know enough right now to be scared or excited, pessimistic or optimistic. We are here to gather data. The decisions come later.

One of the other most reassuring things we heard was from our friend Jennifer O again. We were talking about the doctors – she’d asked if we’d met Lisa’s surgeon yet (his name escapes me right now). We said no. She said we’re going to love him. And, as we talked more, we remembered what we like about the Cleveland Clinic. We trust these guys. And we trust them to be honest. It came up twice in the conversation – if we asked them “would you do this if it was your kid?” we’d believe their answer.


One thought on “June 1, 2010 – post 3

  1. so amazing, the trust is so difficult to gain. I know that it sounds silly, but I was teary when I read that. I know what you mean, I look at our experiences at the U and then long for that feeling, the one where someone makes you feel like all is well. The one that makes you feel like you just got a big hug, content and relaxed. Please give Lisa and Jean that hug from me.
    I am glad that all is well and the updates are nice for me. Thank you


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