So we’re home and settling back into a routine. Max is doing great and SO happy to be home. You would never know he had two major brain surgeries within the last 11 days. So what is next for us?
To begin with, it’s important to know that Max’s epilepsy is considered intractable or drug-resistant. Epilepsy is usually considered to be intractable after failing two AEDs (anti epilepsy drugs). We’ve failed a bunch more than that because Max’s case is complicated and we had to try to mitigate the effects of his seizures while we tracked them and tested every single aspect of them we could. So, with intractable epilepsy often the best course of treatment is epilepsy surgery. There are many different types of surgeries. No two epilepsies are exactly the same, and the course of treatment that works for each person is not the same either. Throughout the past two years on this journey, I have read every single thing I can get my hands on and learned so much about the elasticity of the brain and it is incredible what can be done surgically to decrease seizure loads. If you’re interested in learning more or know someone who has epilepsy, I highly recommend checking out https://www.brainrecoveryproject.org/
The most recent surgery was to implant the RNS. Although incredibly impressive and a potential lifesaver for people like Max, we’re playing the long game with his Epilepsy. That means that right now things won’t look very different for us from the outside from our life pre-surgery. Max is back on his pre surgery medicines because even though they weren’t stopping his seizures, they were lightening them. We definitely saw that when we went off them in preparation for his SEEG surgery. Right now Max’s RNS is like having a permanent EEG machine in his brain. It has two thinner than hair probes running to the two trouble areas that fire up to cause his seizures (as revealed by all our mapping etc.) I told Max it’s like we’re spying on his seizures and gathering as much intel as we can. So each day we scan Max’s RNS with a wand (you know our Potterhead loves this) and it sends his brain activity for the day to his team via some fancy HIPAA certified secret internet (you know Matt loves this) on a special computer that is only used for this. We will generate enough of this data with Max continuing to just be Max only maybe now a little bit like Vicky from Small Wonder (my point of reference) or Cyborg from Teen Titans Go! (his point of reference). Once we have enough of that data, the RNS can be programmed to know EXACTLY what Max’s seizures look like and stop them before they begin. We are very hopeful for this to work for us. We know it might take some time to get there but, we’ve got time and some amazing people on our side. We’ve heard some pretty amazing success stories from people who have the RNS and we are hopeful. In the meantime, we’ll keep on spying on these seizures until we have enough information for his RNS to get programmed be able to say “HEY.. KNOCK IT OFF.. NOT GOING TO HAPPEN.. NOT TODAY, SEIZURE” (Max’s words)
