Still on the path

Micah had a PET scan two weeks ago, and we finally had a chance to talk with his epileptologist (Dr Nangia) about the results. As we expected, the information was not revolutionary. In her opinion, the PET scan is consistent with the information from the EEGs and MRI, which means she is still at this time recommending surgery to remove the abnormality in his brain. But she still wants to do one more test, a magnetoencephalogram (MEG) that does brain mapping. This should help pinpoint with more precision the place(s) that most need to be removed in order to have the best outcome from surgery, which we hope will be seizure freedom for life.

Getting this data should also be able to lessen the risk of damage of some sort to vital function in the surgical process. Since the abnormality appears to be in the left frontal lobe, where language is lodged, we want to make sure that this procedure is as safe as it can be at preserving the language Micah already has and, we hope, improving it long-term.

So, the next steps are these:
1. A MEG (pending insurance approval)
2. A complete baseline evaluation with a neurodevelopmental psychologist.
3. Another overnight video EEG (grr, those things are brutal)

And once those things are complete:
4. Dr Nangia will present Micah's case to a Neurology Conference at Northwestern-Feinberg SoM, which will include all the neurologists, epileptologists, neurosurgeons, interns, residents, fellows--if they work with brains, they are there.
5. We will meet with Dr Nangia to hear the recommendation of the team.

And if the recommendation is to do surgery:
6. Meet with neurosurgeon and Dr Nangia to learn more about the procedure

As you can see, this isn't going to happen anytime soon. We're looking at June, at the earliest, maybe July. Which is actually fine, since Micah would be out of school for the summer at that point, and it would happen at the new hospital location in downtown Chicago. Looks like a gorgeous building, and each child has their own room. Expensive, yes, but I can only dream of how much less stressful and more restful that would be, especially after major surgery.

I go through periods where I feel pretty panicky about the idea of surgery. Then at other times, I hope against hope that he turns out to be a good candidate, which might mean we could put this behind us. Not a fun decision to make, but, again, if they recommend surgery, we plan to do it.

We are enjoying this in-between time, while his seizures are well controlled and we see improved development. Micah loves to play outside these days, and can entertain himself for a long time with rocks and sticks and soccer balls, and today, the bicycle pump. Air blowing in your face is hilarious.