Joan: Her Son Never Gave Up

Joan - Personal story

Joan, 79, was enjoying her life in Tampa until 2008 when she seemed to be aging overnight. She started to have difficulty walking, was prone to falling, became forgetful, and was easily confused. Her decline was rapid over a period of six months. She came to rely on a walker and then a wheelchair. This once independent mother and grandmother could no longer take care of herself.

"She was only in her seventies, but it seemed like I was talking to a 90-year-old woman," said John, 46, a computer network administrator who cut his work schedule and moved in to take care of his mom and ailing father.

Then in 2009, after a long battle with cancer, Joan's husband passed away and John thought he might lose his mother too if he didn't find out what was causing all of her medical problems. He felt it was more than just old age catching up with her. He took his mom to doctor after doctor -- six in a one-year period. Still, five of the doctors could offer no answers or treatments other than attribute it to her age.

The sixth doctor, however, a neurologist, recognized her symptoms as normal pressure hydrocephalus (NPH), an excess build up of fluid in the brain that affects more than 375,000 people in the U.S. The condition can be mistaken for old age, but is also misidentified as Alzheimer's or Parkinson's disease because the symptoms are so similar.1 An MRI and other tests confirmed the diagnosis and suggested she would respond to the standard treatment -- shunt surgery.

In the procedure, a shunt, a thin, tube-like device, is implanted underneath the scalp where it drains excess fluid from the head to the abdomen where it is absorbed safely into the bloodstream. After implantation, the shunt settings may need to be adjusted periodically because removing too much or too little fluid can be problematic. Joan had the CODMAN® HAKIM® Programmable Shunt implanted, which allows doctors to painlessly and quickly adjust the settings using a magnetic device held over scalp where the shunt was placed. In the past, changing a shunt setting required additional surgery.

Shortly after surgery, Joan was thinking more clearly and walking on her own. She was out of the wheelchair. "I have my life back," she said. "I'm shopping again. I'm traveling. I go out to lunch or dinner with my friends and more importantly I'm spending more quality time with my family. I'm fortunate to have a family who didn't give up on me and helped me get the right diagnosis and treatment."

The three primary symptoms of NPH are:

  1. shuffling or walking like your feet are glued to the floor
  2. incontinence and
  3. cloudy thinking or confusion.

If you or a loved one are experiencing one or more of these conditions, consult with a doctor familiar with NPH to see if that is what is causing your symptoms and if you could benefit from treatment.

1 Hydrocephalus Association

While most experts say that approximately 375,000 people have NPH, estimates have ranged from about 200,000 to 750,000 cases of NPH. Hospital discharge data shows that only about 11,500 cases a year are currently diagnosed and treated with surgical implantation of a shunt. Since NPH is often mistaken for other conditions, most cases of NPH go unreported and many are left untreated. Only a specialist can properly diagnose NPH. Surgery is not for everyone. There are potential risks and complications; recovery may take time.

More personal stories

DSUS/COD/1014/0194
Text Size   A | A | A

My Diagnosis

That all changed when a neurologist performed an MRI that showed Joann had enlarged ventricles in the brain due to an excess buildup of cerebral spinal fluid --
Read More