Idiopathic Intracranial Hypertension … The “False Brain Tumor” That’s Increasingly Affecting Americans

Idiopathic Intracranial Hypertension … The “False Brain Tumor” That’s Increasingly Affecting Americans

After undergoing surgery to treat Idiopathic Intracranial Hypertension – often the last option for treating a “false brain tumor” – Nancy Collins was back in action at home with her husband, Kevin, and sons William (l) and Michael (r) … and at work, starting a new career three weeks later.

Idiopathic Intracranial Hypertension (IIH) is not something you hear about every day. In fact, this condition – caused by cerebrospinal spinal fluid (CSF) pressure within the skull that is too high – is considered a rare disorder because it affects only one in 100,000 Americans. Yet, with the epidemic of obesity in our country, a key factor in IIH, the number of cases is increasing.

“IIH is a disorder you should be aware of because – while its symptoms are often commonplace and dismissed as nothing – it can lead to blindness,” Dr. Pinakin R. Jethwa, a board-certified neurosurgeon at Atlantic NeuroSurgical Specialists (ANS), explains.

The most common symptoms of IIH are headaches, loss of vision, blind spots, poor peripheral vision, double vision, temporary blindness, ringing in the ears, neck and shoulder pain. Because these indicators can also resemble those of a brain tumor, IIH is often called a “false brain tumor.”

While IIH is most common in overweight women aged 20 to 50, it can also occur in patients who are pregnant, have recently given birth or take oral contraceptives.

That was the case for Nancy Collins, a 31-year-old from Jackson, NJ. Having had a stroke a few years ago due to medication she was taking, the mother of two young boys knew what one felt like. When she woke up one morning, she began to experience the same symptoms.

“I was in so much pain I couldn’t look at the walls in my room,” Nancy describes. “A few days of testing in the hospital didn’t reveal any issues. A neurologist put me on steroids, but they never took away the pain. A few days later, pain meds were added into the mix. It was a vicious cycle – the pain would lessen, then intensify … but never go away. A spinal tap resulted in the diagnosis of IIH.”

Nancy began the medication prescribed for IIH, but after more testing, she was diagnosed with Cerebral Venous Sinus Thrombosis (CVST), a rare form of stroke that affects about five people in 1 million each year. Often associated with IIH, CVST occurs when a blood clot forms in the brain’s venous sinuses, preventing blood from draining out of the brain. As a result, blood cells may break and leak blood into the brain tissues, forming a hemorrhage.

She was in intensive care at Jersey Shore Medical Center for several days with complications from the spinal tap when she met Dr. Jethwa.

“Surgery is usually the last option for treating IIH,” Dr. Jethwa details. “However, in Nancy’s case, we didn’t want to wait for fear she would lose her vision and her quality of life would further decline.”

Dr. Jethwa proceeded with surgically implanting a shunt in Nancy’s brain. The shunt lowers intracranial pressure by draining the CSF.

“I returned home the day after the hour-long surgery, and three weeks later, I started a new career,” Nancy continues. “Most importantly, I can be a wife and a mother again. Before my surgery, my two children were living with my parents because any level of noise created unbearable pain. Dr. Jethwa truly gave me my life back.”

Atlantic NeuroSurgical Specialists (ANS) is New Jersey’s largest neurosurgical practice and one of the most advanced in the country. For more information, visit

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