Epilepsy Surgery Screening, Day 6

UCLA Medical Center, 7th Floor, 10 am -- Oh happy day ... Cheryl was a good little patient and gave the doctors two more seizures, at 2 and 7:30 am. She now feels the way she does when she's going to have a "bad day."

The resident confirmed that Cheryl will be discharged on Wednesday, and that Cheryl will receive her medicines again.

Except for the fact that it looks like she will need more testing, everything has gone exactly according to plan. Procedurally, in fact, it was all perfect. The only problem is that Cheryl's condition didn't fall readily into the box that we would have preferred.

UCLA Medical Center, 7th Floor, 7 pm -- I returned home for the middle of the day to give Cheryl's parents a break from watching the kids. We just can't catch a break, now, though. Michael's fever and cold have finally cleared up, just in time for the school to call us to pick up Kelly early because one of her eyelids is swollen. Terrific.

Cheryl had another three seizures during the afternoon, so the nurses gave her another Valium to stop them, which knocked her out for a while and gave her another raging headache, now being treated with Excedrin Migraine (we've got this whole thing figured out now).

Dr. Nuwer spent a long time with us late in the afternoon to go over what happens next. It turns out that all of the tests have given good, consistent date, but what they show is something that will likely require additional testing. Whereas most of the seizures of her general type arise from the mesial temporal lobe (i.e., within the temporal lobe), Cheryl's are, as best as I can put it in my layman's terms, closer to the surface near the junction of the temporal, frontal and periatal lobes. (Here are the basics of the physiology of the brain at about my speed.) In addition, the anomoly is basically on the surface, as opposed to deeper inside as with the typical temporal lobe cases. Aside from mere location, the doctor described the problem as "cortical dysgenesis." In other words, the problem has been there since before she was born. One journal abstract I found has this to say:

Cortical dysgenesis (CD) describes a wide spectrum of brain anomalies that involve abnormal development of the cerebral cortex. There is a strong association between CD and epilepsy, and it comprises a significant proportion of children and adults whose epilepsy cannot be controlled with medications. "Cortical Dysgenesis and Epilepsy," Steven N. Roper, Anthony T. Yachnis, The Neuroscientist, Vol. 8, No. 4, 356-371 (2002)

Cheryl's case will be presented for peer review either a week from tomorrow or three weeks from then. Dr. Nuwer is certain, based upon past experience that the neurologists and neurosurgeons will recommend further testing to precisely determine the location of the problem. This is somewhat characteristic of this type of issue, as is it more diffuse across the surface of the brain rather than a specific point within the brain. Dr. Nuwer explained that there are major blood vessels that traverse the area, so they can't simply cut everything out there that might be connected with the problem.

While there are several tests than can be undertaken at this point, it appears that the most likely will be the implantation of electrodes in Cheryl's brain. They would be inserted through tiny holes drilled in her skull (lovely), and she would have to stay in the hospital for about two weeks, having seizures like she did this week. This test, however, would enable the doctors to identify exactly where the problem is. Right now, all of the data suggests that the issue is still with the temporal lobe, which is a good thing, since they would be reluctant to proceed with surgery if the frontal lobe were the problem. The additional tests would locate precisely where on the temporal lobe the bad areas are. Cheryl may also be asked to undergo neuro-cognitive testing on an outpatient basis.

We don't have to make any decisions right away. The neurosurgeon who would consult with us about the Phase 2 testing is out of the country (but involved in her review) until October). The success rates for this kind of seizure disorder are also different, and probably not as high, as with the typical mesial temporal lobe surgery. The neurosurgeon will be able to give us more information on that angle, which may have a significant influence on Cheryl's willingness to proceed.

It looks like surgery, if any, will not take place until next year. That's a huge bummer for insurance reasons. However, we have learned a tremendous amount about Cheryl's condition, so money issues become petty and irrelevant as we look at the next steps to take toward a cure.

Finally: Cheryl comes home tomorrow!