I am a member of the Hot Mess Express. I’m on that train every single day! Some days I’m just a passenger, other days I am the conductor; toot-tooting my way down the track that is my crazy life! I am imperfect, I have baggage; I procrastinate, I am unorganized, stressed. I yell, cry, and am overwhelmed most of the time. Some days I am downright scared! Is it my personality? Is it because I’m a mom of an active five-year-old, or is it my diagnosis? In 2014, I was diagnosed with hydrocephalus, the build-up of fluid in cavities of the brain.
After learning I had a subarachnoid cyst in my brain, I remember lying in the hospital bed and praying, for the first time in a long time. I prayed as I had never prayed before because I wasn’t only praying for myself—I was also praying for my unborn child. I was five and a half months pregnant when I took a trip to the emergency room seeking relief for a headache that lasted more than a week. When I first arrived, the medical staff seemed unconcerned. I’m sure they thought I was just pregnant with a headache. Thankfully they decided to schedule a CT scan, something that is a common protocol for headaches and migraines. I remember the technician asking me why I was having a CT scan performed because it isn’t recommended to have something like this done while you are pregnant.
The technician covered my pregnant belly with several lead blankets to protect my baby and once the scan was complete, I was taken back to my room to await results. Finally, the ER doctor came to my room, but I wasn’t prepared to hear what he had to tell me. The doctor told me I had a subarachnoid cyst taking up ⅓ of my skull and I would need to wait until the neurosurgeon could see me, to find out what my future held.
After finally meeting with the neurosurgeon some hours later, I was informed my cyst was the largest he had ever seen and if I weren’t pregnant, I would have been rushed into surgery. What was going on? I simply had a headache that wouldn’t go away. The reality of my situation didn’t sink in until a few days later and making this situation harder, I was by myself. My husband was away for work and would take at least a full day for him to get to me. This isn’t something you’re faced with every day. I had to call my husband and tell him I had a cyst on my brain that would eventually require surgery. I can’t imagine how he felt once I told him, knowing he was going to have to fly home with worry for his wife and unborn child.
A few days had passed when I finally realized the significance of my diagnosis. I immediately began to worry about my baby. Was I going to have to have surgery while pregnant? Would I still be able to deliver the baby the way I had planned? The first of many specialists I had to begin seeing was an MFM, (maternal-fetal medicine) to check the baby and make sure my cyst has not impacted him. Thankfully, everything was fine and the baby was healthy, so I was released back into the care of my OB. I did, however, decide to wait until my baby was one year old, to have surgery, as I decided I wanted to breastfeed him as long as I could, safely.
Approximately three and a half months after receiving my diagnosis, I delivered a healthy baby boy, without complications. I know God was watching over us during this dangerous time. Although I was grateful for my beautiful, perfect baby, the symptoms of the cyst on my brain only became worse. I lived with continual migraines and dull headaches daily. Thankfully my optic nerve had not become compromised, but this could have been different had we waited much longer to have surgery.
I may never know how this diagnosis has impacted my husband, but he remained strong for me throughout all the numerous doctors' visits and even the surgery when he had to leave the same night to go back to work. He stayed so strong, but I knew that night he was scared. It was July of 2016 and time for my impending placement of a Ventriculoperitoneal Shunt, to release the pressure building on my brain. I was scared. I had never had surgery before, much less brain surgery. I was worried about how long my recovery would be and I had no idea how I was going to take care of myself and my one-year-old child.
The surgery was horrible; there is no other way for me to say it. The surgery itself went fine but recovery didn’t go as planned. I was supposed to be in the hospital overnight, but I wasn’t discharged until three days after the procedure. The neurosurgeon drained the majority of the fluid from the cyst which caused negative pressure in my head. My body wasn’t used to not having the fluid, so this was a major contributor to my pain. I also had an adverse reaction to the initial pain medication and was physically sick for the first 24 hours; leaving me behind the curve in pain management. The recovery time was supposed to be two to three weeks—my mom was with me for eight.
Physically, mentally and emotionally I was drained. I didn’t leave my bedroom for the first week. I was in physical pain, but I was also in so much emotional and mental pain, I felt alone and broken. I felt like no one could relate to what I was going through. I forgot through empathy, sympathy, compassion, and love, someone could listen to you and care about you. Fear and doubt began setting in, trying to make a home in my mind and heart.
I relied on my faith in God to keep me strong during my recovery. I also developed a deeper appreciation for my friends and family, especially my mom. She slept on a twin mattress on the floor of my bedroom so she’d be close if I needed her. She helped me brush my hair, bathed me; cooked for me, and pushed me so I could heal—mentally, emotionally, and physically. She was my primary caregiver for those eight weeks. I know my family wouldn’t have made it through my recovery without her.
Since having a Ventriculoperitoneal Shunt (acting for the natural drain we have, to remove excess spinal fluid and toxins from our brain) placed, my symptoms began to subside. Before surgery, I had a daily, dull headache. It had been that way my entire life. I remember a few months after surgery I realized I didn’t have a headache. Then the next day, no headache and after about a week of that, I realized my headaches were gone and it was an amazing feeling. I still suffer from chronic migraines, but, I’ve learned those are not related to Hydrocephalus or my cyst. One symptom I had, not knowing the cyst was the cause, urinary incontinence, and the constant urge to urinate. I just thought I had a “peanut bladder.” After surgery, the incontinence was gone and the first time I was able to sit through a movie without having to go to the bathroom was AMAZING!!
While I was afraid of having surgery and even more afraid of the consequences of not removing the fluid from my brain, my family now lives knowing we don’t have a subarachnoid cyst lingering in our future. I’m sure I will face future procedures for maintenance of the shunt, but this is normal. For the most part, I can live my life as nothing happened. My son, Robert, knows mommy had had a boo-boo for a while. I told him the doctor gave me “robot parts.” It was the least frightening thing I could think of and it stuck. He knows my “robot parts” are in my head and he needs to be careful when we’re playing around or roughhousing.
Since learning of my diagnosis and having brain surgery, I began sharing my story. In hopes of spreading awareness and helping others. Unfortunately, there isn’t a Hydrocephalus support group near me, but maybe I’ll start one, one day!
Many of my doctors informed me, it’s amazing I had not developed any developmental or intellectual disabilities as a result of the cyst. I can’t believe I went through most of my life not knowing I had a cyst on my brain. However, I know God was in control and watching over my family and me.