Yesterday I took Katie back to Vanderbilt for a follow-up. We had hoped her PET Scan/EEG would have given more comprehensive data but her condition and prior surgeries make the test difficult to pinpoint anything. We knew this may be the case but I was hoping we might get lucky. As suspected her right frontal lobe isn’t firing as it should. Her case was discussed at conference. Conclusion: More data needed. More testing
Next steps are for the pediatric neurosurgeon and the adult neurosurgeon need to connect after spring break but most likely we are looking at a stereo EEG. This is a more invasive EEG to better pinpoint where the seizures a generating from.
On a fantastic note, She has not had a seizure in 3 1/2 weeks. What a relief. We had gotten back to a place of 20-30 per day so this has been a nice break. A part of me wanted the neurologist to say, “Let’s just put things on hold for now.”But we know the big picture. We have seen time and time again over the past 15 years that she will have a honeymoon period after a procedure or med change. Sometimes they last a few months. Sometimes they last a few years. It is what it is. The RNS procedure is mostly likely going to be what changes her outlook longterm. We are pressing forward and hoping to get the next testing in another month or so.
Today is day three of Spring Break. The boys are working so it’s just me and my shadow. We always have a love/annoy relationship going but after a day long rode trip…..she is on my last nerve. God love her. Bless her heart. Bless my heart. God help me. 5 hours in the van. All day. She napped on the way so lucky me. Headphones in. Crime podcast on. One the way back….not so lucky. She loves to lean forward and pull my hair or pull my seatbelt and try to choke me out. It’s real. All the while laughing hysterically. The other annoyance is she constantly wants to change out her DVD. She has a couple CD holders to organize them and she will flip through and perch the next movie on my shoulder to change it out. It’s like driving with a monkey.
So that’s the scoop. No fun Spring Break for us but hopefully we have lots of seizure free days coming. If you want to read more about her next text click the link below.
Stereoelectroencephalography (SEEG)
SEEG is the surgical implantation of electrodes into the brain in order to better localize the seizure focus. At UPMC, we use robotic assistance with ROSA® to accurately and efficiently place the electrodes for seizure mapping. Dr. Gonzalez was the first epilepsy surgeon in the US to offer SEEG and has performed over 1000 cases. He is also a pioneer of robotic-assisted neurosurgery, which improves accuracy and shortens surgery time.
A Laughing Matter 