September Hydrocephalus Awareness Month: A Chicago patient’s journey to diagnosing this rare condition

Despite affecting more than 1 million Americans, hydrocephalus and other cerebrospinal fluid (CSF) conditions remain widely misunderstood. That’s why September is Hydrocephalus Awareness Month, helping more people recognize symptoms that could signal a cerebrospinal fluid-related condition.

Homer Butuyan’s awareness came only after years of debilitating headaches triggered by everyday activities like driving and laughing. The Advocate Health Care medical technologist was eventually diagnosed with a rare CSF venous fistula, a spinal fluid leak that required highly specialized care.

At first he thought his vision, allergies or environment were to blame — especially after multiple negative CT and MRI scans. But when his symptoms worsened in April, he went to the emergency room. There, a new CT scan revealed brain bleeds, despite no history of head trauma. The care team also noticed his pain went away when he laid flat, a key indicator of a cerebrospinal fluid leak.

He was quickly referred to Dr. Krishna Joshi, a neuroendovascular surgeon at Advocate Lutheran General Hospital. Dr. Joshi identified the reason behind his headaches with a three-day long dynamic subtraction myelogram, a diagnostic procedure that few hospitals provide. It revealed Butuyan’s CSF venous fistula.

“A CSF venous fistula is a condition that occurs when fluid that cushions the brain and spinal cord leaks into the bloodstream,” Dr. Josh said. “This leads to abnormal communication between the spinal canal and the para vertebral veins, causing severe low pressure in the brain and debilitating symptoms.”

Dr. Joshi performed a minimally invasive transvenous embolization procedure to stop the cerebrospinal fluid leak, a surgical procedure performed by only a small number of physicians in Illinois and nationwide.

Butuyan was able to go home one day later and was headache-free within two weeks. He has since resumed his normal routine, which includes returning to work at Advocate Health Care where he will celebrate his 32nd anniversary later this year.

“Dr. Joshi and his care team are my saviors for helping me put a stop to my headaches so I could get back to daily life,” Butuyan said. “So, I was all smiles and just so happy anytime I saw them for a follow-up visit.”