"...a 70% chance..."

You take the good. You take the bad. You take it all and there you have the state of our health care. Last year, I finally convinced the missus to wean herself away from Kaiser and try something different. Besides, we were aiming to get our learning disabled daughter into the MIND Institute out of UC Davis. Well, UCDMed doctors near our home weren't taking any new patients so we signed up with Sutter...and loved it. The medical offices are conveniently close. Getting an appointment is generally easy and quick. And the whole atmosphere is far less stressful. PLUS, Sutter has some of the pre-eminent pediatric neurologists and neurosurgeons.

Skipping the boring details, we had another MRI done on our daughter and the medicos were able to spot a tiny legion (less than 3mm) in her brain. Her previous MRI, done several years ago, missed this as the technology did not provide the necessary level of detail. What this means is that this is the likely cause of her seizures and could potentially be removed with surgery. I gotta tell ya, the first time that prospect was brought up to me I was rather strongly against it. The idea of someone cutting into my daughter's head kind of freaked me out. I was hoping that we could just continue the meds and maybe the onset of puberty might mitigate her seizures (as odd as that sounds it was suggested to us by one of her previous doctors as a possibility). However, I've come around and we are pursuing this possibility. Naturally, several tests must be performed to ensure that the area to be removed is not near anything "important"--i.e. speech, memory, motor and/or sensory control areas. Strange to think that there are unimportant portions of the brain but since we only use about 4-6% I guess there's some wiggle room. In mid-April we met with the surgeon, a wonderful woman who says Maddy seems like a good candidate for surgery. Next step is for her to be observed with an EEG during several seizures. This means an overnight (or 2) stay while she is off her meds. We decided to postponed this until this summer so she'd be out of school. (Interesting note: Dr. Z. is also on staff with UCD so whatever path we took would have eventually led to her. Hmm, fate seems to have had this one decided for us.)

Then when we called in June to schedule the observation, we discovered that Dr. Z (the neurosurgeon) had gone on sabbatical. It seems she was on the verge of completing some groundbreaking research that would visually identify the damaged brain tissue making surgery that much more accurate (better than EEG & MRI mapping, I'm guessing). Whether it is the sabbatical or just a bureaucratic snafu, the communication broke down somewhere between the neurosurgeon, the epilepsy monitoring unit (EMU), the neurologist, and the primary care physician. I spoke with various assistants and then waited for someone to get back to me. Called again. Waited again. Called again. Got a different number to call since the paperwork had been forwarded on to the EMU. Called that number and got voice mail. Waited. Got a call back. More bureaucratic dancing. Finally after mentioning (for about the third time) that the request was initiated by Dr. Z and not Dr. A, the neurologist, a light went on for the person on the other end. Waited just a bit more. Got a call back and Maddy is scheduled to go in after Dr. A gets back from his vacation: August 9. This will be immediately following her sister coming back from camp--the same camp Maddy had to miss because we were never able to schedule her time in the EMU.

We assume she will have at least a portion of her head shaved for the EEG. This, on top of the possibility of brain surgery, has our daughter quite upset as she will have to start school in just a few weeks afterwards. I keep telling her though that for the price of a few weeks of not looking like you're used to, you may very well be free of seizures for the rest of your life. And that she'd be able to concentrate better and do better in school.

I keep telling myself that, too.

Dr. A. told us that 70% of patients deemed as good candidates for surgery are seizure free afterwards. Those are pretty good odds, I think.
Dear God, please let it be so.