Epilepsy Surgeries Happened in January

It's been a very long journey with a lot of twists and turns, but after two Phase 1 testings at two different hospitals in two different regions of the country, and after three different Children's Hospitals' epilepsy surgery conferences--encompassing scores of the best neurosurgeons, epileptologists, and other epilepsy medical professionals in the US--considered, debated, and weighed in on Awesome's case, Awesome finally had two epilepsy surgeries in January.

On January 9, Awesome had a five hour SEEG surgery to insert 10 electrodes directly into her frontal lobes via burr holes in her skull.  Afterward, Awesome spent a day the ICU and then was transferred to the hospital's Epilepsy Monitoring Unit.  There she underwent an intense 6 days of SEEG monitoring.  Thankfully, the SEEG was able to capture hundreds of her little seizures.

And then on January 16, she headed back into the operating room again--for a 9 hour surgery.  This time, after removing the SEEG electrodes, in a wondrously orchestrated effort, her two neurosurgeons, assisted by her two epileptologists--who were actively analyzing real time data from the grids and depth electrodes that had been inserted during surgery--found the electrical center of Awesome's focal dysplasia, the place that was generating Awesome's seizures--and removed it.  Technically speaking, her two neurosurgeons performed a craniotomy with a "generous" mesial left frontal lobe lesionectomy and a small partial corpus callosotomy.

Awesome's case had been very, very difficult to figure out.  After the fact, it was easy to see why.  Her focal cortical dysplasia was very deep in the very anterior of her left frontal lobe.  So deep and so anterior and so close to the midline (thus called mesial) that they often (but not always) secondarily generalized before they reached EEG or SEEG electrodes.

I could and eventually will say more about Awesome's very long, very confusing, very difficult, and at times, very discouraging epilepsy pre-surgery and surgery journey, but for now it's enough to know that Awesome's now 16 days post-surgery.  Her recovery has been remarkable.  And she's doing well.  We've not seen any little seizures since surgery--which is a miracle since before surgery she was having a little seizure literally every couple of minutes and indeed, one morning on the EMU, we were told that she had 90 seizures in just an hour and a half. 

Awesome's had just one big seizure since her surgery.  It would be easy to be discouraged by this one seizure, but we've been told that any seizures in the first month don't count because the brain is very irritated and even people without epilepsy often have seizures in the early post-surgery recovery period following brain surgery.  So we're hopeful.

It's been so hard to write any posts at all on this blog during the intensity of the pre-surgery and surgery process.  But I hope to get back to writing again.