Grace: Hi Everyone! As I think you already know, I spent Monday-Saturday of last week as an inpatient of the Epilepsy Monitoring Unit (EMU) at Kaiser Redwood City. The purpose of the visit was to reexamine my initial diagnosis and uncover why my seizures appeared to be getting worse instead of better. Since that unit is very specialized and seems to have a long waitlist, the fact that I got a bed there so quickly is truly an act of God and a result of your tireless prayers…so once again, thank you! The good news about the EMU is that everyone (doctors, nurses…EVERYONE), was kind, helpful, and expertly trained. The bad news was that since my head had to be hooked up to an EEG machine for 5 days, I couldn’t really leave my bed (much less shower….GROSS!!!) for 5 days. Hopefully this explains the lack of photo documentation during that part of my stay 😉
Okay, so the part we’ve all been waiting for: results. Although I imagined that we’d get some definite clarity and direction after the first day or two, that was not the case. My unusual symptoms had even my initial specialist confused, and we all began to fear that I might leave the EMU in as unclear a state as I arrived. This drove us to a lot of prayer and crying out to God for some sort of intervention…. and was possibly the biggest faith challenge I’ve faced thus far: could I keep saying “And if not, He is still good” when it felt like I’d already been through too much and just couldn’t keep going anymore?? But mercifully, after putting us through that test, God did have other plans. On Friday – the last day of testing – God brought a new epileptologist who was able to decipher my complicated brain. He reviewed all my recordings and explained that although there was focal epilepsy in the stroke areas of my brain, it wasn’t causing the entire problem. Instead, my large and unusual-looking seizures were the result of the traumatic brain injury (TBI) overreacting to focal seizures occurring on the other side of the brain. Therefore, with a medication change to control – or at least diminish – the epileptic seizures, the large TBI seizures should go away too. (Simple example: a person who’s allergic to cats doesn’t sneeze if they’re not around a cat).
So, things to be thankful for:
- Although the epilepsy diagnosis is still permanent, the new med seems to be working well so far and I’m doing better at home
- The large seizures we’ve all been so worried about weren’t actually harming me since they were more of a reaction and didn’t involve extra electricity in the brain
Even my fabulous new doctor admitted that this won’t be an overnight transformation like some cases are, but he was extremely positive and optimistic about the long term likelihood of my functioning “normally” and without visible seizures. Praise God!! That is the most hopeful outlook we’ve heard in a long time – and a superb early Christmas present. 🙂
Ivan: Just wanted to chime in…yes, last week was another challenging week, but God yet again proved Himself faithful (spoiler alert: He always will ;)). To reiterate what Grace said, our current diagnosis is that Grace has focal seizures which immediately trigger larger TBI-caused seizures. Medication should help control the focal ones, and the TBI ones should heal with time. On behalf of Grace and I and our families, thank you all so much for your prayers!! Our God is mighty, holy, loving, and present, and we know He hears our prayers. As we approach Christmas, may we pause to reflect on His eternal gift to us and thank Him appropriately by worshipping Him in our lives. God bless you all!