Testing for Epilepsy Surgery

I think all of you few, you happy few, who patronize this site know that Cheryl has epilepsy. She has been on medication for it ever since she was diagnosed in 1990. The medication has never fully controlled the seizures, although she has had stretches of weeks at a time without any events.

Something about having children upset her system. For the past nine years or so, after her teaching career ended, what had been an occasional annoyance became a way of life. Seizures had become frequent enough that she withdrew from activities that required her to make any sort of consistent commitment or required her to drive. Early in our marriage, she taught in a public school and would drive solo from SoCal to the Bay Area or Fresno. Today, she drives three blocks to the grocery store only under the most desperate of circumstances. It’s a matter of confidence rather than actual likelihood of an impending seizure, but the result is the same. It is only through the close proximity and generosity of Cheryl’s parents that we are able to maintain the household, what with the need for shopping and other errands, as well as the kids’ frenetic schedules.

After a particularly ugly spell last year, Cheryl had had enough. She started researching surgical options in the belief that somebody must be trying it. Thankfully, the medical field has made a lot of progress in the last 15 years, and surgery is indeed a viable option for people suffering with epilepsy.

We have now met twice with Dr. Newer of UCLA’s Epilepsy Program, once last year to get a preliminary consultation, and again a few months ago to finalize our decision to enter the program. The program begins with a testing regimen in which Cheryl will be hospitalized at UCLA and induced to have seizures. She will be hooked up to various machines and videotaped, and nurses will perform functionality tests as she goes through the episodes. Coupled with PET scans, MRIs and language tests, the testing scheme is intended to precisely isolate the area of her brain that is not functioning properly. If the damaged area can be identified and isolated, and does not adversely affect other tasks occurring in other parts of the brain, she may be a candidate for surgery. That decision is not made until a panel of about 20 neurologists and epilepsy specialties review her file and agree that she is a good candidate to go forward.

Cheryl will be going to UCLA on Thursday and staying through Monday (all the time our insurance company would allow). We fervently hope, perversely, that she will have a horrible time and have lots of seizures early so that we don’t have to worry about running out of time for the doctors to get their data. Incidentally, this is why we got the iPod, to cover the hours of boredom.

We intend this post to be a source of information not only to our family and friends to drop by here regularly, but to anyone to is considering the same procedures and finds us through an internet search. I will provide updates and further detail about the testing as we go along. If you are one of those people who is in the same situation, or has been through it, please feel free to leave a comment. It is our hope that by adding our experience to the information pool, we can help other people who have suffered with epilepsy.