We got it. Finally. The call we've been waiting for since we left Johns Hopkins on the afternoon of April 24. The results. Originally we were told that we'd be getting a call from one of our two primary doctors about a week after we were discharged. They would be meeting at "the conference" the Tuesday after we left.
"The conference" is a group of neurologists and neurosurgeons who work closely with the patients of the epilepsy monitoring unit. A true brain trust (in many senses of the words). With Hopkins being ranked #1 year after year in US News and World Report for neurology and neurosurgery, it can be a little intimidating to think about how incredible this group of people is. And here they were, ready to talk about Will. They typically meet each Tuesday to talk about the recently-discharged patients of the EMU.
Unfortunately the "best of the best" are often presenting at international neuro conferences - as was the case on the first Tuesday after we were discharged. Then the following Tuesday, they were catching up from not meeting the previous week. Ugh. I know you can't rush greatness, but we were getting antsy. I left messages for assistants and coordinators to call me back several times over the past couple of days... just to figure out where the decision was. I am sure I was annoying. But I was as patient as I could be about this whole thing. And I did not get to be such a great advocate for Will by being patient!
So the call came in this evening. Our amazing, kind doctor and her best fellow. I knew the moment they started talking that the conference had decided that Will was not a surgical candidate.
They told me that they presented Will to the conference as they would any other patient. They showed his MRI to the group and they discussed the typical seizures that we see at home. Those things all lead people to initially believe that Will is a slam dunk candidate for surgery. He has remarkable brain damage on his right hemisphere and his seizure side effects only affect his left side. To be a surgical candidate, your seizures must be localized to one hemisphere of your brain.
Then they showed the group Will's seizure EEG. And the room got silent. The EEG actually showed that Will's seizure started on the left side of his brain. Then it spread quickly and completely throughout his brain. As I said in my Big One post, his seizure affected both sides of his body. And there is audio on the video record of the seizure when I say "his eyes are fixed to... the right?" because this was odd and unusual. At home, Will's eyes fix to the left during a seizure. Always.
Because of this, and because they only have one seizure to go on, they feel as though the risks of surgery outweigh the benefits for Will. Epilepsy surgery is not an exact science. The neurosurgeons study the EEG and based on their experience, they decide a volume of brain to remove.
In Will's situation, because his brain damage occurred at such a young age and because he has a large mass of brain missing from the right side of his head, the likelihood is that the left side of his brain took over doing some of the function that the right side typically does. This is neuroplasticity - the brain making new connections - and typically it is a good thing. But because of this neuroplasticity, no one wants to take the risk of removing a part of the left side of Will's brain. They just can't be sure what function they might actually affect.
My initial reaction was complete disappointment. As much as we had gone to Hopkins to determine IF Will was a surgical candidate, I also believed in my heart that he WAS a candidate. This was just validation. And then, while they continued to talk about how great of a kid Will was, my brain wandered. For a second, all I could think about was where else should we go to get someone who is willing to get this surgery? But I stopped that thought almost as soon as it started.
We went to Hopkins because they're great at this. They are one of the top neuro hospitals in the world. And the top doctors were telling me that they would not perform this risky surgery on Will. Did I really think it was a good idea to shop around for someone who was willing? Ummm... no.
I brought myself back to the present, and we started talking about our options for Will moving forward. There are several new drugs on the market that have been successful at controlling Will's type of seizures. We can look into the ketogenic diet again. And if we want to, there is an option for a different surgery called a vagus nerve stimulator, which acts similarly on the brain as a pacemaker does on the heart. None of these is typically as successful as the surgery (Dr. V's quote: they work on 30-50% of people about 30-50% of the time), but it doesn't hurt to have more options to try out. The vagus surgery is not nearly as risky as epilepsy surgery, and is done regularly at many hospitals across the US (including our NC hospitals).
The final message that they left me with was this: Will's epilepsy is actually pretty well controlled with his current medications. While his seizures are scary and disruptive, his non-medicated seizure showed that things could be a lot worse. They thought that having him evaluated was 100% the right thing for us to do.
I guess that's it for now. We have to noodle over these recommendations with our neurologist and determine which direction we want to go. As disappointed I was originally to hear that Will is not a surgical candidate, my mama heart is relieved that he will not undergo the dangerous and invasive epilepsy surgery. I'm gonna go hug my boy now.