how rhianna and ucla health accomplished the impossible (and the scary)
Some may think being “double-jointed” is a mark of flexibility, but did you know some see it as a sign of an intense health complication?
Only 18 years old, Rhianna Wilson was seeking relief for her vision loss, leg pains and insufferable headaches. She was diagnosed with a rare genetic disorder known as “Ehler-Danlos Syndrome”, characteristically marked by overly stretchy connective tissue between the body’s joints.
The results of an MRI that showed she endured a small slippage of her spinal column that directly affected her brain -- a progression referred to as a “Chiari malformation”. This meant that the lower part of Rhianna’s brain shifted below the average height a brain could naturally shift.
Rhianna’s mother came across the work of pediatric neurosurgeon, Dr. Aria Fallah at UCLA Mattel Children’s Hospital. When Rhianna shared that the symptoms she was experiencing worsened after periods of standing, Dr. Fallah referred Rhianna for an unconventional stand-up MRI -- a procedure typically done while the patient lies flat on their back, taking the pressure off of their spine.
It turns out Rhianna’s brain lowered to a total of nine millimeters into her spinal column. Due to the over stretchiness of Rhianna’s connective tissue, it caused her brain to sag and compressed her brainstem and spinal cord. This slip of her brain and spinal column is what was causing Rhianna’s pain, growing blindness and ability to walk.
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Dr. Fallah removed Wilson's top vertebra and the backbone of her skull, creating more space for her brain and relieving the pressure causing her symptoms.
After the procedure, when Rhianna opened her eyes, she could see clearly again. In less than three weeks recovery time, she was living like a typical teenager: driving, hiking and enjoying an active social life she'd missed during her senior year.
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