Hi everyone - Caroline here. I’m taking the baton from Natalie just this once for a particularly exciting update we received today. She is the family writer, so hopefully I do okay.

Before I do, I just want to say thank you. During this (much harder than anticipated) recovery, I haven’t yet had a chance to reach out to each of you. Until I do, I want to thank you all for the incredible gestures of support. Thank you for all of the amazing videos and notes I received in the hospital, and for everyone who visited me - you all kept my spirits up during such a difficult time. And thank you for all of the cards, gifts, and meals we’ve received since we’ve been home, which has helped our transition and my recovery significantly, as well as made us feel so loved. We are so lucky to have such a far and wide support system through this. Until you each hear from me,  please know how unbelievably grateful I am. 

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Almost recovered.

I am slowly getting back to feeling like myself. The only remaining pain I’m feeling is muscle pain on my head, which the surgeon told me could unfortunately last for months. I’m trying to be patient. I’m steadily gaining my energy back, and finally taking Oakley on longer walks every day (scroll to the bottom for pics!). Remember when I could only make it up the block? Our biggest recovery success so far was removing all the incision glue from my hair. It took hours but it’s finally out. Shout out to Natalie for her patience, caution, and painstaking hair preservation.

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The exciting part: What’s next?

Today Natalie, my parents, and I met with the surgical team to discuss formal findings and the next steps. I’m going to borrow a bit of Natalie’s scientific ✨razzle dazzle ✨ here. 

I have formally been diagnosed with Focal Cortical Dysplasia, a type of Epilepsy that originates from a lesion on my brain in an area called the Posterior Insula. Following my January procedure, my surgeon believes they’ve identified the lesion and can entirely remove it via ablation (as Natalie described in this post). As mentioned, the SEEG was significantly more successful than we anticipated.

When I asked him about outcomes, he said that he does not like to be overly confident with patients, but that truthfully he feels very positive about my case, and will be “disappointed if I am not seizure-free within a year of my surgery.” He ballparked a 75% chance of success toward seizure-freedom but ultimately believes the ablation could get rid of my seizures completely. This is the first time a doctor has ever discussed a real possibility of seizure freedom with me. 

The reason I decided to write this blog post myself is to share this news. I’ve been suffering with epilepsy every day for 23 years. Before last month, I had no clinical proof that my seizures were even physiologically real. Before today, I had no reason to believe that I could ever be free of them. I’ve been to dozens of specialists, undergone countless tests, and went into this invasive and painful process knowing it was likely the last hope I had of ever finding an answer. To not only finally have an answer but maybe a lifelong solution, is the first deep breath I’ve taken in years. This is true for all of us who were at the table listening to that call. If you are going through something like this, don’t give up on yourself, advocate for the care you deserve, to be seen as a patient and a person, and trust that there are both answers and solutions out there for you.

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For the tougher part: The waiting game. 

When I left the hospital, my ablation date was scheduled for 9/27. Luckily I snagged a 7/19 date due to a cancellation. This is still pretty devastatingly far for me. However, it is the morning after the Noah Kahan Fenway Concert (is it a blog post if we don’t mention Noah Kahan?), so in many ways this feels poetically perfect in my opinion. What better way to celebrate and then report for pre-op at 5:45am the next day?

They also have me on the cancellation list. So technically, between now and 7/19, I could get called in on any day and go in 24 hours later to get it removed. Please put good vibes into the universe that this happens! But maybe not a few days before the Noah Kahan concert, I’d really like to go.

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One more thing.

There’s a few people I want to specifically mention and then I’ll be done for now. As was clear from Natalie's posts, my time at MGH was incredibly challenging. I would not have made it through that week without the support system that I had. (Keep scrolling!)