We heard back from the team at Texas and have some plans going forward. One very important takeaway is that Max’s seizures haven’t moved to his right side. Everything is staying on his left side. Matt and I had been concerned that his seizures were moving to both hemispheres because of the different presentations we had been seeing. We are moving into Phase 2 of surgical testing with Texas. Phase 2 testing is more invasive testing done to help pinpoint the seizure hotspots. This will be a Stereo EEG which is an internal EEG that is placed via Robotic surgery. Tiny channels are drilled and probes go into predetermined areas of the brain that the team knows they need more information on. Then we will stay in the Epilepsy Monitoring Unit for up to 2 weeks while they map Max’s seizures. Through the use of the SEEG, they are able to map Max’s seizures and see detailed information about his brain activity before, during, and after. They also can get more detailed information about how the critical areas of his brain are affected by seizures and abnormal firing. This allows them to create a map that identifies areas that can be sacrificed in a subsequent surgery and conversely areas they cannot touch. Max had an SEEG done prior to his RNS. When explaining it to him, I compared his brain to a minefield. You wouldn’t go running blindly through a minefield, but if someone drew you a map of where all the mines are then you could safely navigate it. Similarly, the team will have a very detailed map of Max’s brain that tells them parts that could be safely operated upon. After the SEEG, we hopefully will have the option of one of the following:
- Resection (problem spots fully removed if it is a spot that is just tubers firing and causing seizures and taking up real estate)
- Ablation (think of laparoscopic robotic brain surgery)- similar to the RNS probe placement- they would use lasers through the SEEG entry points to burn problematic areas if our problem areas are smaller spots
- RNS revision: They would relocate the leads from Max’s existing RNS to a location of his seizure focus. They referenced potentially putting the lead in his thalamus
There is also a possibility that the SEEG will dictate that Max cannot have any of those surgeries without it being too dangerous. We are hopeful that resection or ablation is an option for us. It may sound crazy to wish for your child to qualify for brain surgery but we would do anything to lessen Max’s seizure load and give him (and Frankie!) a chance at a more typical childhood.
Right now we are slated to head back to Texas Children’s around the 3rd week of August for Max’s SEEG. That seems incredibly far away right now because it’s taken us a long time to get here but we are grateful to have the best pediatric TSC neuro brains in the country working on our best dude’s case. The reason for the length is twofold. People come in from other countries to seek help for their kiddos at TCH because they are amazing and also each SEEG kiddo gets booked for a 2 week stay to ensure there is enough time to see the number of seizures needed and get the best data. It’s essentially a brain surgery and individual case study on each kiddo so they only do 2 at a time. There is a possibility we could get bumped up, but for now, we’re holding on until August.
