Heather, 30

My name is Heather and I was born in June of 1987. At my three and six month check ups, my head measured large, but my father had a large head. By nine months, it was clear something was wrong. Ben Carson put in a VP shunt and I grew up completely normal. I could feel the bulb of the shunt in my head and doctors told us if the bulb was depressed and I started feeling lethargic, go to the hospital….But life went on, I pole vaulted into college and graduated with a 3.7 GPA.

When I was 27 years old, a couple of months before I got married, I was out running errands. I called my fiance and told him I didn’t feel well and was coming home. For a few months I experienced mild symptoms: burning and heaviness above my right eye (shunt side), I was lightheaded, had aching around the shunt. Nothing crazy, but I knew I should get checked out. I saw Dr. Daniele Rigamonti in December and he explained that the two largest ventricles of my brain were not communicating. The shunted right ventricle was completely collapsed and overdraining while the left still had hydrocephalus. I sat in my car with my mom, on the phone with my new husband, and told him through tears that I had to have brain surgery. In January of 2015 I had an ETV and an endoscopic septostomy. Communication of my cerebrospinal fluid was improved, they didn’t have to shave very much hair, and I thought I was in the clear.

For four months after surgery, however, I had constant tinnitus on the right, orthostatic headaches, severe stiffness in my neck, and numbness and pain in my face and ear. Dr. Rigamonti had already left for Saudi Arabia in March when I had an MRI in May 2015. That MRI revealed that I was still experiencing overshunting: a Mercedes sign, fluid accumulation, collapsed ventricles, and a sagging brain stem. In June, we decided to monitor the pressure inside my head and I was admitted to the Neuro ICU. The doctors put a fiber optic device in my head and I became the tin man! Normal intracranial pressure (ICP) is between 0 and 20. I lived between 4 (laying down) and -19 (sitting up). According to Dr. Solomon, normally people between -15 and -20 are vomiting and very sick but that’s where I was used to living.
Since my ICP was so low, it was suggested that my shunt was no longer needed so Dr. Alfredo Quinones (specializes in brain cancer and brain tumors) ligated my shunt via the catheter below my right clavicle. Seven hours later, with an ICP of 30+ and the threat of acute hydrocephalus, the shunt was unligated and an anti-siphon device was planted to control how much CSF was draining. The sedation I was under started to wear off on the operating table since it took Dr. Q longer than expected to try to attach this new titanium device to my old, plastic catheter and I had to be intubated. Doctors thought I needed a whole new shunt, but without a hydrocephalus specialist on staff at Hopkins, I was sent home to wait until Dr. Mark Luciano came from Cleveland.
At my first appointment with Dr. Luciano, I was ready to go! My insurance deductible had been met, I was told I needed a new shunt, and I was impatient. Of course, Dr. Luciano was less ready to jump into such a risky procedure. How long would this anti-siphon hold me over?
An MRI in January 2016 revealed a break in the catheter and I prepared myself for surgery number 5 in one year. Dr. Luciano successfully replaced the entire VP shunt. Covered in bruises and adjusting to a new system was rough. I still have tinnitus, some headaches, and I can tell you when it’s going to rain…. but 20 months later I’m back to living my life and enjoying being married!
Dr. Luciano says no bungee jumping or skydiving, but I’m OK with that. 🙂

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