I am Gina, a 35-year-old wife, mother of two, and cardiac nurse practitioner.
In March 2021, I had my second son. After my pregnancy, I began having frequent migraines that I had previously only gotten around the time of my menstrual cycle. I spent my son’s first birthday in a dark, quiet house fighting off the worst headache of my life. One night, I was awoken to severe, sharp headaches that were different from what I’d ever experienced. As a medical provider, I talked myself out of it being anything life-threatening and chalked it up to a recent bout with COVID-19 a few weeks prior.
I ultimately sought an evaluation with my PCP, who reassured me it was likely from all the postpartum hormonal changes and weaning breastfeeding. She offered me imaging to put my mind at ease. I underwent an MRI the following day.
I received the report via MyChart quicker than my physician could contact me. “Brain Tumor. Neoplasm. Mass.” No words you ever want to read on your MRI report, but my reality as of June 2nd, 2022 at 12:56. Time stood still.
On Tuesday, June 7th, I spent nearly 3 hours in an MRI machine getting further scans of my brain and spine. The leading diagnosis remained a 4th ventricle subependymoma vs tectal glioma. Unfortunately, nobody I talked to had any solid leads for a neurosurgeon equipped to handle my tumor. I did my own searching and sought three opinions. Nobody recommended a biopsy due to the location of the tumor and the appearance of the tumor on imaging. Despite two of the three doctors agreeing to the same treatment plan, I still felt uncertain of my choices.
In March of 2023, in a state of helplessness, I stumbled upon the Brain Tumor Network. I completed the online intake form and was immediately contacted by a nurse navigator who took the time to listen to my journey. My navigator promptly obtained all my records, MRI scans, and second opinions. She gave me several solid leads on where to seek another opinion based on my unique diagnosis and provided me with a comprehensive literature search. To make my experience even better, my navigator connected me with the American Brain Tumor Association (ABTA), who promptly paired me with a mentor who has walked a very similar journey as I.
Reaching out to Brain Tumor Network has hands down been the best decision I’ve made on my brain tumor journey, I just wished I’d found them sooner! I no longer feel lost, alone, confused, or helpless. I have peace of mind and confidence moving forward in my care, all thanks to the wonderful services and hard work of the Brain Tumor Network!