Our warrior Olivia is 21 years old.
Olivia started experiencing seizures just before her second birthday. After over a decade of uncontrolled seizures, we needed help and decided it was time for another opinion. Olivia’s new doctor ordered a complete workup, including an MRI and EEG. Then, at the age of 18 Olivia was diagnosed with LGS.
We met with Olivia’s new team to discuss her LGS diagnosis, medications, and surgical options. The team believed that Olivia would be a good candidate for brain surgery. They discussed two options with us, Corpus Callosotomy (CC) and Deep Brain Stimulation (DBS). After researching as much as we could and a few more consults with her team, we decided to proceed with the DBS surgery.
The months leading up to surgery were filled with worry, anxiety, and hope.
Then, in March of 2021, we went in for the procedure. Because of some of Olivia’s other health conditions, it was decided that it would be best to complete both parts of the surgery in one day rather than the typical two-part procedure.
Eight grueling hours went by, and Olivia was out of surgery and heading to recovery.
Then, two hours later, I was finally able to see her. As I turn the corner into Olivia’s room she is quietly singing “Can You Feel The Love Tonight” from the Lion King. I knew right then that she was going to be ok.
The following morning Olivia got up and asked to write a note to her classmates. Then by day two post-surgery, we were on our way home.
Olivia came home with incisions on her chest, her neck, and the side and top of her head. Over the next few weeks, Olivia rested a lot. We administered Tylenol and applied ice packs for any discomfort.
Two weeks post-surgery Olivia’s stimulator was turned on. Her doctor reminded us that the DBS is like any other treatment or medication, it is not going to cure Olivia’s seizures. However, we would work to find be best dosage to hopefully reduce her seizure activity.
By six weeks post-surgery Olivia was back in school and we started scheduling regular three-month appointments for stimulator adjustments.
It is now almost three years later… While we are still making minor adjustments to Olivia’s DBS, her quality of life has drastically improved. Olivia has had a 60% reduction in seizures and we have been able to reduce several of her medications. Olivia’s cognitive abilities have improved, she is more alert, and happy. No more sleeping for eighteen hours a day.
We are so thankful that we went forward with Olivia’s surgery and look forward to many more improvements.
Written and submitted by Olivia’s mom, Lori.
“I hope that our story helps some and gives hope that there is something out there to improve our warriors lives.” – Lori, mom to Olivia