Chp. 3 The Waiting Game

I apologize for the delay, I’ve been waiting to hear back from the hospital on when we’ll do the surgery, that’s right, we’re doing it!...

My appointment with my neurosurgeon, Dr. House, went well. Those appointments are always a lot to take in. After appointments like these I feel emotionally, mentally, and physically drained. Have you ever had doctor’s appointments like that? It sure is fun… haha

My parents and I met with Dr. House for a second time because there were a lot of questions we wanted to clarify before saying yes to doing the brain surgeries, yes plural. At this point in my “journey” to find a better way to fight epilepsy, there is a lot of uncertainty on what we will do in the future. What I mean is we just don’t have that much information on why and where the seizures are taking place. We have a general idea, the left side of my brain, where all the trauma from the surgeries occurred but that’s about it.

Waiting for doctors can be tiring... haha

There might be a total of 3 brain surgeries in the near future. Right now I am waiting to hear back from the hospital on scheduling a brain surgery where they will place 60-80 leads on my brain with wires that will come out of my skull and attach to a computer, there at the hospital. They close everything up but leave a small hole so that the wires can come out and attach to the computer. They’ll wake me back up and after a couple days (depending on how I’m feeling) they will trigger seizures and record their findings. After we have sufficient recordings Dr. House will go back in and take off all of the leads and close me back up.

Right now things are kind of “hanging in the balance.” I say this because we don’t quite know what we will find until we are in and doing the surgery. From past experience this is what I think will happen,

First-We will do the surgery with the 60-80 leads to learn about my seizures

Second-Then I will have a 4-6 week recovery

Third-In-between these 4-6 weeks there will be a conference with my neurologist, neurosurgeon, and other doctors to review my history and the findings from surgery and discuss what the best next step should be 

Fourth-Then we will learn if the Neuropace device would be a benefit for me or not.

So here we are, in the best part of life’s challenges, testing our patience! I will strive to post each Monday to keep you up to date and while we wait, share past experiences.