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Pseudotumor Cerebri: Getting the Diagnosis Right

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Pseudotumor cerebri (PTC), aka idiopathic intracranial hypertension (IIH), is often said to be a rare condition. Simply speaking, pseudotumor cerebri is a condition in which the body either produces too much cerebrospinal fluid pressure or doesn't absorb it well, resulting in increased cerebrospinal fluid pressure.

Undiagnosed or untreated, PTC can cause many problems, some of them quite serious. Those problems can range from headaches and Migraines to permanent blindness.

In England, 19-year-old  Rachel Mulhall discovered the dangers of PTC after being misdiagnosed with headache not once, but six times. In July, 2009, Mulhall went to her general practitioner doctor for a headache that she described as "something crushing her head." The diagnosis? Headache. Over the next month, Mulhall saw five more doctors at Medlock Val Medical Practice in Droylsden, Greater Machester; Tameside Hospital; and Mnachester Royal Infirmary. All of these NHS doctors diagnosed her with "headaches" and sent her home.

Her parents finally scheduled an appointment with a private doctor at Alexandra Hospital in Cheadle, Manchester. Before she got to that appointment, however, things went horribly wrong. The morning she was to see the private doctor, Mulhall woke totally blind. Mulhall told a reporter:

"I could just see objects but I couldn't see colour. I couldn't see the TV, I couldn't use my phone.

I was trying to say something and my speech was coming out all slurred and different words were coming out.

We knew there was something wrong so we rang a private doctor. That was the day Morgan (her daughter) woke me up crying and I was totally blind.

I could hear her but I couldn't see where she was. I had to feel my way to my front door and to my neighbour next door and she rang my dad."

By that time, the build up of cerebrospinal fluid was termed "life-threatening" by doctors who said she could have been left with permanent brain damage or could have died if surgery hadn't been performed within a couple of days. During the surgery, a shunt was inserted to drain the cerebrospinal fluid.

Mulhall says that the delay in treatment has resulted in the loss of 80% of her vision, which doctors tell her she may never regain. The damage was caused by the excess fluid causing papilledema, swelling of the optic nerve.

Mulhall's mother, said she feels let down by the NHS and went on to say:

"She was screaming in pain and it was just so frustrating that no one was listening to us,' she said.

It's been really traumatic and I do feel really let down.

I just want to say to other people that if anyone is getting headaches daily they should go and see someone."

Summary and comments:

Pseudotumor cerebri / idiopathic intracranial hypertension is said to be rare. I have to wonder if it's as rare as it's said to be, or if it goes undiagnosed too often.

Too many doctors seem to not know how to fully rule out IIH. Some people do have papilledema (swelling of the optic nerve), but some who have IIH do not have papilledema, so an eye exam is not necessarily diagnostic. Nor does IIH always show up on an MRI or in other imaging studies. The fluid level must be considerably higher than "normal" for it to appear in imaging studies.

The only definitive diagnostic test for diagnosing or ruling out IIH is a lumbar puncture (spinal tap), with the opening cerebrospinal fluid pressure measured.

If you and your doctor suspect you may have IIH, do not accept negative findings of an eye exam or imaging studies to mean that you do not have it. Insist upon a lumbar puncture before the determination is made that you don't have IIH. Treatment for IIH isn't always surgical as it was in Mulhall's case. For many people, it can be managed by drawing off enough fluid to put the pressure in the normal range during the lumbar puncture and using medications to keep the pressure down.

For more information about IIH, including a list of potential symptoms, see What Is Pseudotumor Cerebri.


1 Daily Mail Reporter. "Young mother goes blind 'after doctors diagnose deadly brain condition as headache - SIX times'." MailOnline. April 28, 2010.

Medical review by John Claude Krusz, PhD, MD

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Teri Robert, 2010. Last updated May 2, 2010



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