Craniopharyngioma

Thank you for the opportunity to share my story. I am a 50-year-old mother of three boys living in Northern California. My husband and I, thankfully, have been fortunate to have been healthy all our lives.

I took great pride in my excellent memory. It was what helped me get through Organic and Biochemistry class. At the age of 49, I started having lapses in memory and terrible nightmares. My internist brushed it off as perimenopausal brain fog. Several months went by, and finally, I demanded imaging. My doctor relented and ordered an MRI. Since it wasn’t an emergency, my appointment was three months out.

In the meantime, I suffered a headache so intense it sent me to the ER at Stanford. I was given a CT scan, and the craniopharyngioma and cyst were identified.

I was immediately admitted to the hospital and had two surgeries within a week. Thankfully, I had an extraordinary surgeon at Stanford, Dr. Juan-Carlos Fernandez-Miranda. He was able to remove the tumor entirely. Unfortunately, I also lost my pituitary gland.

I went home after being hospitalized for 10 days to be with my family for Christmas. On New Year’s Day, I was readmitted to Stanford with meningitis. The physicians and staff at Stanford were incredible, and I was well taken care of throughout this scary time. I was hospitalized for 35 days in total.

I’m grateful that mine was a benign tumor, and I am doing fine adjusting to my hormone replacements [needed because my pituitary gland was removed]. My hope is that when people have complaints like mine, their primary care doctors more proactively order CT scans.

Through this ordeal, I was put in touch with a man who had also had a craniopharyngioma removed. We both felt it would be helpful to have a network of patients specifically dealing with or who have had a craniopharyngioma. The treatment and outcomes of the various types of brain tumors are so different and complex. It would be helpful to hear from other people who’ve had a craniopharyngioma. I realize it’s a rare type of tumor, but it would be valuable to establish a network of patients.

Opinions expressed within this story belong solely to the author and do not reflect the views or opinions of the National Brain Tumor Society.