Janay

Hello everyone, my name is Janay. I have hydrocephalus. 

I’m 37 now, but my diagnosis came at the age of 8 after I had a seizure at home one day after elementary school. That seizure was the first of many. Following my hydrocephalus diagnosis, I had my first shunt surgery, performed by Dr. Alexa Canady —the first African American woman to become a neurosurgeon in the United States in 1981.  

When Dr. Canady retired from practice, my care was transferred to a doctor she had trained. I remained under his care for the next 18 years at the Children’s Hospital of Michigan in Detroit, where I endured over 100 shunt revisions.  

During this time, I also experienced one of the most difficult moments of my life—losing my mom. Even though I was an adult in my twenties, coping with hydrocephalus and the repeated surgeries while grieving took a huge toll on me. It felt like none of my shunts were working. For over a year, my doctor kept switching from one shunt to another, trying to find a solution, but nothing seemed to help.  

This was when I decided to take control of my condition and start doing my own research. I was determined to understand what hydrocephalus is and all of its side effects.  

Through the process of understanding my condition, I made the decision to find support, and support others in their journey. In 2016, I started an online support group, followed by my own hydrocephalus page—both of which my doctor fully supported. He knew and understood me well. After years of surgeries and countless challenges, we had developed a strong bond, even though the repeated procedures were exhausting and frustrating. 

Around age 30, I could no longer be treated at the Children’s Hospital and had to transition from pediatric to adult care, which meant changing doctors again. My new doctors were young and not as experienced. They dismissed my symptoms, telling my sister that I was seeking attention and that nothing was wrong with my shunt. They insisted I was depressed and needed to be on medication or in therapy. But they didn’t understand—I had spent years researching my condition. I knew my body. I knew when something wasn’t right.  

Eventually, one doctor listened, and I underwent more revisions. Then came one of the scariest moments of my life—I woke up from an induced coma after nearly dying from a surgery gone wrong. That was my breaking point. I knew I needed a new doctor at a different hospital.  

I began researching specialists in my area who accepted my Medicaid insurance. I met with doctor after doctor, but no one wanted to take on my case. No one wanted to operate on me after having over 200 shunt revisions.  

I finally found a doctor at a nicer hospital, farther away. Did that matter? Maybe. It was a different environment than I was used to. He met with me and my sister; he acknowledged the reality of the situation: I had endured countless surgeries and had been without a doctor for two years. But I wasn’t feeling optimistic. 

My sister spoke up. “Doctor, my sister has been sick for so long. She suffers from constant headaches, sleeps all day, and is overwhelmed with anxiety and depression. She’s not living. Please, help us give her a chance to start living. She needs someone who will truly listen. She knows her condition better than anyone. We’re running out of options”.  

Maybe he felt sorry for us, or maybe he genuinely understood. Either way, he agreed to help. But there was a catch—he didn’t take my insurance. He told me to change my insurance so I could continue seeing him.  More importantly, he promised to work with me to develop a plan that would help me feel better without relying on endless surgeries.  

And that’s exactly what he did. He listened. We worked together to figure out what worked best for me. Unfortunately, he left over a year ago for Indiana, but before he did, he made sure I was in good hands. My new doctor listens to me, and together, we continue researching and exploring new ways to keep me functioning.  

Living with hydrocephalus isn’t just about having a shunt—it’s about understanding your shunt and dealing with the possible emotional challenges that come with it. The depression of being sick your entire life. The anxiety of finally feeling good after so long but being too scared to fully live. Through one of my toughest fights, I found the strength to pursue a peer navigator license. It helped me to feel like I was accomplishing something, even though I wasn’t feeling well. I was able to get my mind off the pain I was dealing with and focus on something positive instead.  

My advice? Keep up with your doctors’ appointments—follow-up visits are crucial. My faith keeps me going, and I truly believe that holding onto hope and support is what gets us through the hardest times. Life with hydrocephalus is hard, but I refuse to let it define me. 

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