In Neurosurgery , Visual Impairment

Posterior Fossa Syndrome

I was not prepared for how Kiara would look after her first major tumor resection. Even though her neurosurgeon discussed the likelihood of her having posterior fossa syndrome, it’s difficult to even type the experience. She was trapped in what can only be described as “neuro storms.” Her mouth and tongue would twitch and her eyes jittered separately and in different directions. She was completely unresponsive to me or any of her caregivers like she was in a coma or far, far away. I knew she was in there and probably scared and hurting, and I didn’t leave her side. I thought she may die at any second because her brain and body were just not right. Her head was strongly tilted to the right and her right eye was completely inward. Her lips were puckered. She had tubes everywhere, including an EVD, two IVs, a feeding tube, and a catheter, plus the pulse monitor and blood pressure cuff. Monitors constantly beeped and alarms went off frequently. It was heartbreaking and devastating.

Posterior Fossa Syndrome is a post-operative condition that affects patients that have had surgery on the back side of the base of the skull that contains the brain stem and cerebellum. Symptoms usually appear 1–5 days after surgery. Most symptoms improve in weeks or months, but some symptoms may continue for years following surgery. The symptoms of posterior fossa syndrome include problems with speech and language, motor skills, and mood changes; however, symptoms can be different for each person.

Over the course of a couple of weeks, Kiara slowly regained control of her face, eyes, and body. Speech therapists helped her relearn how to swallow, eat, and speak; physical therapists helped her regain gross motor skills. There was nothing more terrifying than watching her “neuro storms” after her first major resection, and I was so very grateful that she did not have posterior fossa syndrome after her second craniotomy.

In Neurosurgery , Oncology

Astrocytoma

Juvenile Pilocytic Astrocytoma

In Oncology

Mutation

Tumor growth

In Symptoms

Ataxia

For years I googled “drunk walk,” “wobbles,” “poor balance,” “abnormal gait,” and was unable to find much to help determine what was wrong with Kiara. Specialists said she was fine, but in my heart I knew something was wrong. The professionals we went to were confident that it was and inner ear or vestibular problem and not cerebellar, since her symptoms were not like others that they had seen. Days before Kiara’s MRI when we learned that her brain was herniating because of a massive tumor, the neurologist mentioned a word that I hadn’t heard before — ataxia. I got in my car, grabbed my phone, googled ataxia, and felt as though Niagara Falls had opened up on me. This one word was in tons of medical journals and articles that I never accessed before. It was a terrifying word because the diagnoses associated with it were potentially fatal, but it was THE word I needed to know. It’s the reason I created this website.

Ataxia is the presence of abnormal, uncoordinated movements. It is a general term used for a dysfunction of the parts of the nervous system that coordinate movement, such as the cerebellum in the brain. An unsteady, staggering gait is described as an ataxic gait because walking is uncoordinated and appears to be ‘not ordered’. Many motor activities may be described as ataxic if they appear to others, or are perceived by patients, as uncoordinated.

Kiara never gained the strength and stability that most kids develop after they’re toddlers. She always had a drunk walk and easily lost her balance. She started seeing a chiropractor to see if alignment and symmetry could help her with stability. I thought it may have been torticollis that was throwing her off balance. A few months later, she began weekly physical therapy appointments. Later it was vision therapy for 18 months. We didn’t know that it was a brain tumor in her cerebellum.