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Wednesday 26th October 2016

'Phantom tumours' on the rise

11th May 2010

Doctors in the United States believe that pseudotumour cerebri (PTC), which mainly causes so-called "phantom tumours" in adults, may be on the rise among children.


Though the disease was first described over 100 years ago, doctors are still not able to treat it, and do not know why it causes people to gradually lose their vision.

Lauren Ashley, now 15, began to experience symptoms of the disease at the age of five.

Since the first symptom that she noticed was that her eyes were sore, her parents took her to an ophthalmologist.

The ophthalmologist noticed that Lauren had swelling in her optic nerve, and was the first to believe that the girl might have a brain tumour.

Steve Roach, chief of neurology and vice chair of paediatrics at Nationwide Children's Hospital in Columbus, Ohio, said that he and his colleagues believed that the reason why more and more children were getting PTC had to do with rising obesity rates.

In adults, PTC has been linked to obesity in about two thirds of cases.

Throbbing morning headaches, with a sensation of built-up pressure in the head, are the most common symptom of the disease.

While doctors are not sure what causes the disease, they think it may have to do with exposure to certain antibiotics or birth-control pills.

Diane Ashley, the girl's mother, said she was devastated by the news. Roach said that his clinic was currently treating about 80 children who had PTC, and that he had recently helped establish the first children's clinic for treating the disease.

Because the nature of the disease is a mystery, necessitating the expertise of various health disciplines, the clinic employs ophthalmologists, neurologists, and endocrinologists.

PTC is also known as idiopathic intracranial hypertension (IIH), and benign intracranial hypertension (BIH).

For several decades, doctors have been able to use brain scans to diagnose the disease, which has to do with elevated levels of cerebrospinal fluid within the brain.

Roach said that the human head usually replenished and reabsorbed cerebrospinal fluid in a continuous cycle, allowing the fluid to provide a cushion between the brain and the skull.

In PTC, the brain does not absorb its own fluid, leading to intense pain and even blindness.

Roach said that some people manage to treat their PTC by losing weight, although more serious cases needed surgery.

However, the surgical methods used to treat PTC are crude, and all involve draining cerebrospinal fluid from the body.

The reason why people with PTC gradually lose their sight has to do with nerve damage to the eyes, caused by the brain's inflamed response to its own cerebrospinal fluid.

People who have lupus, obstructive sleep apnoea, chronic kidney disease and Beh├žet's disease, may all be at risk of losing their vision due to PTC.

Roach said that loss of vision with PTC was very gradual, with the loss of peripheral vision occurring first.

Because of the crude nature of current operative treatments for the disease, Lauren is still in constant pain from her PTC.

Lauren said that her life has never been normal, and that her headaches made her feel as if someone were stabbing through her head.

Diane Ashley and other parents of children with PTC started a foundation, known as I.H. Gray Matters, to raise money for families who cannot afford to treat their children.

Ashley said that the more people got to know what PTC was, and the more doctors who knew what what it was, the more research doctors would do.

The disease was first called serious meningitis by Heinrich Quincke, who described it in 1893.

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