It took more than 14 years for Shelly to get her condition diagnosed. During this time he experienced many symptoms like tingling in fingers and arms, nausea, inability to tolerate heat and weakening of vision. Shelly told that once she could not even get up from work due to dizziness and heat and eventually her fiance had to come to pick her up. Due to this incident, he was referred to the Neurology department and an MRI was done, which revealed a 4 mm Chiari malformation. Although doctors said surgery was not necessary, Shelly’s symptoms worsened so much that even simple movements like standing and bending became difficult. Let us tell you that Chiari Malformation is a condition in which the lower part of the brain is pushed towards the spinal cord, causing it to “come out” of its normal place in the skull.
The neurologist said his symptoms were consistent with pseudo-tumor cerebri, which could potentially be linked to his history of enlarged ventricles and hydrocephalus. Doctors believe that his current health struggles may be linked to the time of his birth. Shelly explains that she was born via emergency C-section because she was upside down, with her head resting on her mother’s ribs. He had swallowed a large amount of amniotic fluid. At the age of six months, she was very irritable and could only be soothed by being held. Meanwhile, the size of his head seemed unusually large. In such a situation, his parents took him to a neurologist, but the doctors dismissed the concern.
In 2009, CT and MRI on complaint of chronic migraine revealed mild hydrocephalus (fluid accumulation in the brain), which was treated with medicines. Doctors linked the frequent complaints of fainting, fatigue and headache during adolescence to his weight. Then in November 2024, a neurologist explained to him with a model of the skull, “We have cerebellar tonsils at the base of our brain. Your tonsils have sunk further down than normal and are slipping through the hole in the base of the skull where the spinal cord passes. They are pressing on the spinal cord and blocking the flow of cerebrospinal fluid, causing your symptoms.” Currently she is in the ‘wait and watch’ stage and is managing the symptoms with lifestyle adjustments.
