Tristan's Surgery

Tristan and brain surgery - Some of you may know that Tristan carries a Dx of Tuberous Sclerosis Complex, which, in a nutshell, means that he was born with benign tumors on many of his organs, including his heart, skin, and brain. While he has been lucky enough, so far, to not have major complications in many areas, he HAS been having refractory seizures in the right temporal lobe of his brain (refractory = uncontrolled by meds). The seizures are "focal" in nature, have been happening regularly for over a year, and present throughout the day as periods of staring. We have been to Boston Children's Hospital (one of the best TSC clinics) nearly 15 times over the last 2 years for different types of tests, appointments, etc. Tristan has had numerous EEGs, an MRI, PET-scan, babyMEG, HDEEG, all kinds of assessments, and probably some things we're forgetting.  All of the data from last year, plus the constant seizure activity, means we have arrived at Right Temporal Lobe Resection Surgery. That particular part of Tristan's brain is the home of many cortical tubers (hardened brain tissue), and is the main culprit for his seizure activity at this time. On 3/25, doctors will remove a large portion of the right temporal lobe, to permanently stop that area from causing seizures. Surprisingly, anticipated side effects are minimal, and surgeries like this have very positive outcomes. We are hoping for the best and looking forward to a seizure-free Tristan. We’ll be spending a few weeks in the Boston area, which will be an expensive trip, not even counting the procedure itself. If you can help us through a donation, thank you. If not, that’s okay too – thank you for even taking the time to consider it.  

Love,

Brian, Megan, and Tristan.