'My life just sort of collapsed in on me'

In March 2014, Cathy Haft, a New York real estate broker, experienced a severe case of vertigo while she and her husband were scuba diving off the coast of Cozumel. She experienced another attack the next day, but the vertigo eventually went away several days later.

A few months later, Haft experienced another symptom: difficulty reading. It was hard for her to follow a storyline, and her vision was sometimes blurry. Although Haft believed she needed new glasses, her eye doctor told her that her prescription had not changed and that he wasn't sure why she was having vision problems.

In 2016, Haft began to experience urinary urgency and incontinence. Although she underwent a successful surgery for a prolapsed bladder to treat these symptoms, they later returned less than two years later. Periodic Botox treatments also only worked temporarily to treat her bladder problems.

By 2018, Haft's symptoms had worsened to include balance problems, intermittent dizziness, and worsening headaches. Her symptoms eventually pushed her into retirement since she her symptoms made her unable to work. She also had to quit her daily Zumba class and yoga since she could no longer balance well enough to do the exercises.

"My life just sort of collapsed in on me," said Haft, who is now 72. "I couldn't exercise any more. I couldn't work. My family was very worried."

Lawrenzo Heit, Haft's husband, was also concerned that Haft could be developing Alzheimer's disease. Haft's behavior had started to become erratic, and "her short term memory had gotten very bad," Heit said. "She couldn't remember conversations — things she'd said the day before."

Doctors fail to pinpoint a cause for the patient's symptoms

Over the next four years, Haft visited multiple specialists who evaluated her for neuromuscular and balance-related ear issues that could be causing her symptoms, but none could determine the true cause.

In November 2021, a neurologist who specialized in treating patients with unexplained dizziness diagnosed Haft with benign paroxysmal positional vertigo (BPPV). This condition "occurs when small calcium crystals are dislodged and float in the canals of the inner ear, sending confusing messages to the brain about the position of the body," Boodman writes.

Despite several treatments for BPPV, Haft's dizziness did not improve. She would later go on to see another three neurologists between March and July 2022.

Although all three neurologists suggested potential causes for Haft's symptoms, including spinocerebellar ataxia, neuromuscular problems, or vestibular migraines, none of them turned out to be correct. The potential diagnoses were either ruled out by testing or by treatments that had little effect.

A spine surgeon finds the true cause

In addition to her symptoms, Haft has a rare genetic condition called schwannomatosis, which causes benign tumors to grow on nerves and can lead to severe pain. She has undergone six operations to remove tumors from different parts of her body and regularly receives MRI scans to detect potential tumors that could affect her hearing.

In April 2022, an MRI discovered a potential tumor on Haft's spine. The neurosurgeon who treats Haft for schwannomatosis believed that the growth on her spine could be causing her symptoms and sent her to his colleague, a spine surgeon at NewYork-Presbyterian.

However, the spine surgeon did not believe the tumor was the cause. After observing Haft's gait and examining images from her MRI, the surgeon saw that her ventricles, which produce cerebrospinal fluid, were enlarged. He determined that she had a chronic condition called normal pressure hydrocephalus (NPH), which is commonly called "water on the brain."

According to Boodman, NPH occurs when excess fluid accumulates in the ventricles and is typically seen in people over the age of 60. It can be caused by trauma or a brain tumor, but may also occur for undetermined reasons. Some symptoms of NPH include urinary incontinence, memory loss, unsteadiness, personality changes, and more. Because many of these symptoms are seen in other conditions, such as Alzheimer's or Parkinson's disease, NPH may be misdiagnosed or overlooked by doctors.

To treat her symptoms, the spine surgeon recommended Haft undergo a series of spinal taps to remove excess fluid from her ventricles. If her symptoms improved, the diagnosis of NPH would be confirmed, and Haft could potentially receive shunt surgery to further improve her symptoms.

"Shortly after the spinal tap Haft walked 75 feet down the hospital hallway with little difficulty and no walker," Boodman writes. "Her incontinence and cognitive function also improved." A few weeks later, Haft underwent shunt surgery.

Although Haft was "so relieved there was a reason" for her symptoms, she also expressed frustration that it took so long for her to get an accurate diagnosis. "It's just so … depressing," she said. "… It's pretty astonishing that this disorder is not that uncommon and no one put the pieces together."

Since her surgery, Haft still experiences some symptoms, such as headaches and occasional dizziness, but says her life has improved significantly overall. She currently takes regular Pilates and aerobic classes, can read without trouble, and is driving again.

"I'm grateful to be living now like I did before I got sick," Haft said. "It was enormously tough not to be able to have a life." (Boodman, Washington Post, 11/25)

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