Diagnosed at 13
Angel
Story Written by Self
My name is Angel. I was born in 1958 at Israel Zion Hospital. I was delivered with forceps because the umbilical cord was wrapped around my neck.
At birth, I showed no signs of trauma. But at the age of 13, everything changed. I developed severe headaches and had trouble walking and maintaining my balance. My mom took me to our family doctor, who then referred us to Dr. Wesley at Beth Israel Hospital. Dr. Wesley diagnosed me with muscular dystrophy and sent me for a muscle biopsy. But my mom didn’t believe that was the correct diagnosis—especially as my headaches became unbearable.
She sought another opinion and took me to Columbia Presbyterian to see Dr. Churchorian. That’s when I was finally diagnosed with hydrocephalus. I was told I had only a few days to live and needed emergency surgery to place a shunt. Cerebrospinal fluid (CSF) had been building up in my brain for 13 years, compressing it by three-quarters of an inch. My family and I had a hard time accepting the diagnosis.
I’ve undergone 10 surgeries and have lived with a shunt for over 50 years. After my first surgery, I had to relearn how to walk and accept the reality of living with a shunt. I’ve always had to be careful to avoid any injury to my head. Each surgery has brought different symptoms, mostly confusion and headaches—signs that the shunt may be malfunctioning.
Life with hydrocephalus has been overwhelming and brings daily challenges. Most days it feels like no one truly understands what it’s like.
Despite everything, I’ve tried to live a full life. I graduated from high school, got married, had children, and now I enjoy spending time with my grandchildren, who bring me so much happiness.
My advice to others is simple: live your life to the fullest and be happy. If something doesn’t feel right, check in with your doctor. Know that there are resources to help you.
Tell us about your journey with hydrocephalus!
Share your story of hope and perseverance with us! We will feature the amazing individuals in our community who are living life to the fullest regardless of their condition! Stories are reviewed by our staff and posted on our website and through social media. Stories should be no more than 800 words long. Click here to submit your story today!
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For questions, email: info@hydroassoc.org with the subject line “Share Your Story”.