Losing Count

I’ve lost count of where we are in this process. I know Ryan had his first surgery on June 15th. I remember Ryan had his seizure exactly one week after he had the 13 probes inserted. I am fairly sure he had two more probes inserted three days after the seizure. It is from there where the timing of things really gets fuzzy.

I’ve been calling this period “Limbo Take Two” but this time instead of waiting for a seizure we waited for answers. Ryan’s doctors determined that his epilepsy is extremely complex. While it is generalized epilepsy, it has traits of focal epilepsy. Ok, there is one answer but it’s not the answer we really need to hear.

The answer we are waiting for is how the doctors want to treat this complex epilepsy. Usually, medication is the only treatment for generalized epilepsy but the doctors keep bringing up a NeuroPace (responsive neuro stimulator “RNS” – responds by stimulating brain to stop seizure when it is starting) and they bring up a deep brain stimulator (“DBS” – constant stimulation of brain to stop seizures). So, which is it?

After multiple conferences amongst Ryan’s whole neuro team and after the neurosurgeon consulted with colleagues around the US, finally a decision was made and an answer provided. Other level four neuroscience centers around the country have been implanting an RNS device, or even two devices, in a very small and select population of generalized epilepsy patients, like Ryan.

Ryan’s surgeon and team took this information, conferenced again, and decided that it would be better for Ryan to try the implant despite his complexity then to send him home with an epilepsy that is clearly worsening.

So here we go again…surgery number three. Ryan and I have been researching this from our end as well. Asking questions to the doctors, reading the little research materials out there, and talking to others with an RNS.

More answers: This surgery will be about 4 to 5 hours long. They will start prep around 11 am tomorrow. He will have the probes that have been in the past two weeks taken out and two probes put in that will be attached to the battery which sits under the scalp and flush with the skull.

The next biggest answer we received? Ryan should be discharged Monday. Monday! I may have lost count of where we are with things but I do know that Monday will be exactly three weeks from the date of Ryan’s admission. He is ready, and we are all ready, for him to be home.

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