Letter One: i’m getting brain surgery

Hi Family and Friends (that are like Family),

I hope you are well and enjoying the spring! 

I wanted to thank you for your messages, flowers, care packages, check ins, texts, and in general just letting me know you’re thinking of and love me. I can’t tell you how much it means.

Most of you know what's been going on with my health to varying degrees, but as there are new developments I figured this was the simplest way to update all of you. (Plus, even though I love you all, it’s a LOT to explain once, not to mention doing it twenty plus times. I mean, oy. . . ) 

Up until two and a half years ago I was having approximately 5-15 small seizures a month but hadn’t had a Tonic Clonic (previously referred to as Grand Mal) seizure in about 14 years. Before I went on medication twenty two years ago, I had approximately 5-15 small seizures a day along with the occasional Tonic Clonic, so I considered it a win. 

When the Tonic Clonics started occurring again two and a half years ago I was taken off guard. Of course I knew it was always a possibility, but it had been 14 years! The possibility seemed so remote that I hadn’t even prepared Chris for what to do in the event that I had one. I really thought I wouldn’t have to worry about them anymore. So when the first one happened I tried to tell myself that maybe the Tonic Clonic was just an anomaly that happened every 14 years, like an Epileptic Leap Year or something 🙃. I let my neurologist know, but I knew that his response would be (and was) to increase my medication.

I know a lot of you know, but for those of you who don’t, the meds I take are powerful central nervous system depressants and come with harsh side effects, including weight gain, sedation, etc.  At that point my Neurologist respected my decision not to increase my meds, and to instead try lifestyle modifications, i.e. more sleep, cut back on work, less stress, etc..

Unfortunately, despite doing everything I could to reduce stress in my life, there were more Tonic Clonics. And while previously I had Aura’s (a feeling or smell that warned me a minute or so before a seizure), these were coming on suddenly with absolutely no warning, and the period of time between seizures became shorter until they were occuring just a week apart. I had also started to have debilitating migraines, so obviously more serious medical intervention was necessary.

My Neurologist referred me to a Neurosurgeon at MGH (Mass General Hospital), and after a Zoom appointment with him and his team they determined I was a good candidate for surgery and felt confident they could help me. But before surgery they outlined a plan that included a battery of tests at MGH. EEG monitoring (a three day EEG in the hospital), an MRI, and Neuropsych testing. All of which I have undergone many times before, but not in years, not at MGH, and of course never during a Pandemic. So that was cool! 

Then the Neurosurgeon (Dr. Mark Richardson for all of you who want to Google him) brought my case to a panel of 30 other Neurologists, surgeons, etc. to discuss my brain and decide on what kind of surgery would be best. There are devices for Epilepsy now that weren't even possible twenty years ago. One of which is called RNS, which is a device that will be implanted into my brain and hopefully help regulate my brain activity so I have fewer seizures without resorting to medication. Explaining what the device does deserves its own dedicated email, and frankly this one is already pretty long, so I’m just going to put a link to the device at the bottom of this email. 

After multiple delays and lots of trying to pretend to be patient, they have been able to get me into the OR on the 25th of this month. Silver lining; it's a good thing I had to wait for months because as it turns out, getting used to the idea of having brain surgery takes a minute.

Please know that I do not expect or need you to say or do anything.  

I wanted to explain all of this to you as I have because the situation is so multi-layered. It can be overwhelming on a good day, and while I've had a lifetime to learn, understand, and live with it, I know that most people are at a loss for what to say or do. When I was 21 (ish) and going through the first cycle of uncontrollable Tonic Clonic seizures, all I wanted was to do what my friends were doing. Instead I was in and out of hospitals with an invisible chronic illness that prevented me from driving and doing anything even remotely reckless, which is what I understand our twenties are for. . . right?? I felt isolated and alone. But (brace yourself because I’m about to get super mushy), I don’t feel that way today because of all of you.

So who knows what this surgery and device will bring, but I’m lucky to be in the best possible hands, and I have hope for the first time in years.

Love you,

Emily

Here you go: RNS-neuropace.com