March 30
A note from Caroline
Read other updates here.
Good Morning from MGH! Caroline (sans lesion) here 👋🏻
I’ll start up front with the good news - the surgery was a huge success 🎉🎉🎉
They removed all of the lesion they planned to ablate. Dr. Richardson is incredibly happy with how the surgery went and is very confident that they have removed the origination source of the seizures. This is a huge relief to us all.
The true test of his work is my night’s sleep, which is when most of my seizures occur. I often wake up with 7-8 full-blown seizures or auras (pre-seizure sensation, mine feel like my throat is closing up). Last night, I didn’t have any seizures or auras. I do not remember a night in my life when this has happened to me. What normally would have set off a seizure - nurses coming in to check on me or drinking water by my bedside - were completely normal events. This is an incredibly good sign to see such progress only hours after surgery.
We will need a few weeks to see if it fully worked but I am - we all are - feeling incredibly hopeful. Dr. Richardson said that if for some reason it is not fully resolved, they know exactly where to go back in and clean up that area once and for all. As he put it, if we haven’t already, “we’re gonna get it”. However, he’s very optimistic we shouldn’t have to go back in.
In terms of recovery - as of right now, I am feeling pretty good! I just have some site pain, weakness, and an English-Muffin-sized bald spot on my head (good thing I like hats). Dr. Richardson said inflammation peaks over days 3-4, so I may get a bit worse before I’m better. But I am feeling much more myself than after the last surgery, which is a huge relief.
I also want to thank everyone who sent cards, good luck texts, door dash gift cards, items from my wish list, and is offering to come visit. You should all be getting cards from me soon but I want you all to know how appreciative I am. I feel so lucky to have such an amazing support system, reaching far and wide. Once I’m feeling a bit more settled in, I’ll come back with another update. For now, I’ll leave you two stories (scroll down).
That’s all for now. 💕🧠
Love, Caroline
Because of my deep love of merch, Natalie and my Aunt Peachy collaborated on an epic gift with one of my favorite phrases on it. Protect The Head is a boxing adage I learned from a book that acts as a mantra on anxiety and overthinking. It’s meant to activate the part of the brain that helps you step out of harm's way from your opponent in the ring - literally or mentally. My whole family wore them to the hospital and when Dr. Richardson came out to meet everyone (during a break in the action in the middle of surgery), he was gifted with his very own!
I posted this on Instagram a couple days ago but for those of you who aren’t on there, I wanted to share. I wrote this down in a notebook three years ago on a particularly low day. I had just started all of my seizure medications and they making me really sick and tired all of the time. While we had finally found out it was Epilepsy, I was resentful that it had taken us so long to figure it out. I was scared I was going to feel this sick forever. Shortly after my first surgery, I found this in my desk - it was the only thing from that notebook I had saved when I moved out of Boston. If keeping and finding this when I did wasn’t a sign, I don’t know what is.
I am finally full of much more hope than I am fear.