Today was a WILD day.

I’ll cut to the chase - the depth electrodes are OUT! We are all so relieved this part of the procedure is over and behind us (especially Caroline).

Note - this update does include descriptions and pictures related to Caroline’s depth electrode removal.

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The good news.

Caroline’s team held their surgical conference this afternoon and hashed out her case. This conference included around 20 people from the epilepsy team, neuro surgery team, and neurology team. They reviewed the SEEG findings and discussed which surgical option was the best route.

In a surprising turn of events, the team determined that they feel most confident pursing an ablation vs. the originally discussed resection. An ablation procedure uses thermal technology to remove/destory brain cells that cause the seizures. At the start of our pre-surgery conversations months ago, we didn’t think this option was even going to be a possibility. Since Caroline’s seizures had never been picked up on any test at that point, there was a huge possibility that they were originating from multiple areas of the brain.

However, the SEEG data consistently showed the same brain activity patterns. After reviewing all of the “mini seizures” and full seizures that were captured throughout the week, the epilepsy team discovered that the source of Caroline’s seizures is incredibly pre-defined. Like… the seizures absolutely never originated from another location in her brain, ever.

This is a HUGE deal!!!

Ablations are far less invasive than a resection and have a much higher success rate towards seizure freedom. They also have a shorter and easier recovery period. Since they are minimally invasive, Caroline also won’t have to shave anymore additional areas of her head!

Since we originally thought Caroline was going to have a resection, they proactively got her on the books for March 12. Now that we’re pivoting to an ablation, that date will change. Unfortunately, the team only performs a couple of ablations a month (vs. multiple resections) so we aren’t entirely sure how long we’ll have to wait for the second surgery. We can expect a call from Dr. McGraw tomorrow or Wednesday to get more details on the conference and what he thinks about next steps.

Right before the epilepsy doctor came by to give us this update, I stopped in the Lunder lobby and added Caroline to their “Prayer Tree” (scroll for pics). I think the universe was listening.

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The bad news.

Once we got the great news about the surgical conference, the only thing standing in our way from full relief was the depth electrode removal. Remember that procedure? You know, the one that was supposed to be quick, painless, and not as scary as it sounds?

It wasn’t quick. It was painful. And honestly, it was just as scary as it sounds.

Now, I’ll preface the rest by saying that Caroline’s extraction experience was unusual and more challenging than the doctors typically see (naturally 😒). The procedure was done by a doctor from the neuro surgery team and Dr. Richardson’s PA - both of which assisted in the placement surgery last week.

The first handful of electrodes were pretty easy. Caroline experienced the “pressure” that other people described and never really felt any of the electrodes actually coming out. Caroline actually consented to donate the first four electrodes to epilepsy research! The team will save and study any remaining brain tissue on the electrodes, including one that was placed in her amygdala!

Unfortunately, things did take a turn for the worse as the procedure continued. For whatever reason, some of the screws that held the electrodes in place were extremely tight. By extremely tight, I mean that the doctor had to basically use his full body as leverage to get them moving. As you can imagine, this was incredibly painful for Caroline. Even with her airpods in and music blasting, no amount of distraction was powerful enough to help with this.

I sat at the foot of her bed and held both of her hands. I did my best to be encouraging and comforting but to be honest, it was heartbreaking. Despite her bravery and resilience, this pain was not something we had prepared for and there was truly nothing we could do except finish. For once, I would love if something Caroline needed to do was just easy. I would love if she didn’t always have to be brave.

Nonetheless, Caroline’s bravery didn’t waver the entire time.

Again, this is not how this procedure typically goes and is likely the reason it used to be done in the OR with anesthesia.

When everything was done and the team had cleared out, Caroline’s family joined us back in the room and provided lots of love and support - and hugs.

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As I write this, Caroline is sound asleep in her bed. She is free of the “gauze tail” and the pet carrier is gone from her bed. She is only hooked up to monitor her vitals and can walk to the bathroom herself. She doesn’t need the bed alarm on anymore and the room is no longer being video monitored. She won’t be woken up every two hours for a neuro exam. I hope she gets some good sleep (all things considered) and from the sounds of it (snoring), I think she will. She is still in a good amount of pain but we have a great night nurse who is doing everything she can.

Even though we got best case scenario news, it still feels like a cloud is hanging in the air. Today was really hard.

That being said, we are officially on the other side. We have been planning for this surgery for months, arguably years. The first time the idea was floated by Dr. McGraw was a year before our wedding. Ever since January 16th was put on the calendar, there hasn’t been a single day that’s gone by without us thinking about it. And now it’s over.

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We are heading home tomorrow and have never been more excited to see our dog and sleep in our own bed. We already have family who have made us food, will help with unloading the car, are taking our laundry for us, and will help with anything else that comes up. The outpouring of support from everyone has truly been overwhelming (in a positive way). We are so lucky to have this many people who care about us.

I really believe that things are going to get lighter. The uncertainty we’ve all been carrying will be replaced by hope. The fear we’ve all been experiencing will be replaced by relief. In some ways, it feels like we can all exhale when we’ve been holding our breath - some of us for over 22 years.

They figured it out. They found it. They know what to do and how to move forward. We have answers and solutions.

Hope is medicine, too.

Sending my love and pride from MGH.

Love, Nat

(Scroll for pics!)