Medical Mysteries: Dizzy and off-balance, she searched for the cause
A real estate broker developed memory and urinary problems. Doctors performed many tests but overlooked the reversible cause.
November 25, 2023
For the next four years specialists evaluated her for neuromuscular and balance-related ear problems in an attempt to explain her worsening condition, which came to include cognitive changes her husband feared was Alzheimer’s disease.
In August 2022 Haft, by then dependent on a walker, consulted a Manhattan neurosurgeon. After observing her gait and reviewing images from a recent brain scan, he sent her to a colleague.
Less than eight weeks later Haft underwent brain surgery for a condition that is frequently unrecognized or misdiagnosed. The operation succeeded in restoring skills that had gradually slipped away, stunting Haft’s life.
“It’s pretty astonishing that this disorder is not that uncommon and no one put the pieces together,” she said.
In her case a confluence of confounding symptoms, a complex medical history and the possible failure to take a holistic approach may have led doctors to overlook a condition that can sometimes be reversed — with dramatic results.
Off kilter
Haft’s reading problem was preceded by a frightening episode in March 2014. She and her husband were scuba diving off the coast of Cozumel, the Mexican island where they had taken dive trips for many years, when she suffered a severe attack of vertigo.
“The whole environment underwater was spinning” recalled Haft, who was 60 feet below the surface when it happened. The same thing occurred the following day. Several days later, the severe vertigo disappeared.
“My life just sort of collapsed in on me,” Haft recalled. “I couldn’t exercise any more. I couldn’t work. My family was very worried.”— Cathy A. Haft
Within months Haft noticed she was having trouble reading, one of her hobbies. She had trouble making sense of a storyline and her vision sometimes seemed blurry. Haft thought she might need new glasses. Her eye doctor found that her prescription hadn’t changed and told her he didn’t know why she was having trouble.
In early 2016, Haft began experiencing urinary urgency and incontinence. In March she underwent successful surgery for a prolapsed bladder, a condition that can result from childbirth, which causes the bladder to drop. Less than two years later, the urgency and incontinence returned. Haft thought she might be having complications from that operation. When medications didn’t help, her urologist recommended periodic injections of Botox, a treatment for overactive bladder, which were effective.
By then Haft was also contending with balance problems and intermittent dizziness. Headaches, which she had battled since childhood, had worsened.
“Walking was becoming a real chore,” she said. “I was off-balance all the time.” A neurologist, the first of several she consulted, told her she had migraines.
Difficulty walking and her worsening memory led to Haft’s retirement in late 2018. Frequent falls led her to drop out of her daily Zumba class and she quit yoga, which she had practiced for 25 years, because she was too wobbly to maintain poses.
“My life just sort of collapsed in on me,” Haft, now 72, recalled. “I couldn’t exercise any more. I couldn’t work. My family was very worried.”
Haft’s husband, Lawrenzo Heit, feared she might be developing Alzheimer’s disease. Her behavior had become erratic and “her short-term memory had gotten very bad,” he recalled. “She couldn’t remember conversations — things she’d said the day before.”
Clear ears
In late 2019, after two otolaryngologists ruled out balance-related ear problems, Haft started seeing a psychologist for weekly talk therapy. After two months, the therapist suggested her symptoms might be psychosomatic.
“She asked me, ‘Could you be imagining this? Do you think it’s because you retired and have nothing to do?’ ” Haft recalled, adding that she felt “disbelief that somebody I had been talking to for months thought it was all in my head.”
In November 2021 Haft saw a neurologist who specializes in treating patients with unexplained dizziness. The doctor concluded that Haft was suffering from benign paroxysmal positional vertigo or BPPV.
The episodic condition, which is common and most often affects people over 50, 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. BPPV is often treated with the Epley maneuver, head movements that can shift fragments out of the ear canals.
The neurologist performed the maneuver on Haft. Her dizziness did not abate then — or after subsequent attempts.
By early 2022, the Botox bladder injections stopped working for reasons that were unclear. Haft found the resulting incontinence particularly upsetting.
Between March and July 2022 she saw three more neurologists. The first suspected spinocerebellar ataxia, a rare, inherited and incurable brain disorder that causes problems with balance and memory. That hypothesis was ruled out after an analysis of a blood sample sent to the Mayo Clinic. The second neurologist suspected a possible neuromuscular problem affecting her legs; testing ruled that out, too. The third diagnosed vestibular migraines, which cause vertigo. The doctor prescribed a slew of migraine medications that had no effect, along with Botox injections in Haft’s forehead, which alleviated the headaches but not other symptoms.
“She asked me, ‘Could you be imagining this? Do you think it’s because you retired and have nothing to do?’ ”— Cathy A. Haft
For more than 20 years Haft has been monitored for a rare disease called genetic schwannomatosis, which causes benign tumors called schwannomas to grow on nerves, causing pressure that can result in severe pain. Haft has undergone six operations to remove tumors on her thigh and elsewhere. She also receives regular MRI scans of her brain aimed at detecting a tumor that could damage her hearing.
When an MRI performed in April 2022 uncovered a possible spinal tumor, the neurosurgeon who treats her for schwannomatosis sent her to his colleague, a spine surgeon at New York-Presbyterian. Perhaps the growth on her spine was impairing her ability to walk and causing other symptoms?
The spine surgeon told Haft he didn’t think so. He focused on her shuffling gait and examined images from the brain MRI, which showed enlargement of fluid-filled cavities known as ventricles. These ventricles, located deep in the brain, produce cerebrospinal fluid that bathes and cushions the organ.
Sometimes as a result of trauma, a brain tumor or for no discernible reason excess fluid accumulates in the ventricles of people over 60, resulting in a chronic condition called normal pressure hydrocephalus (NPH), popularly referred to as “water on the brain.” NPH can be treated but not cured.
Symptoms include urinary incontinence, memory loss or personality changes that can develop gradually and may be mistaken for Alzheimer’s disease, along with a shuffling gait and unsteadiness sometimes misdiagnosed as Parkinson’s disease. Falls and balance problems may occur. In medicine there is even a mnenomic — “wet, wacky and wobbly” — to describe the triad of prominent symptoms.
Because these symptoms are seen in more common conditions, NPH can be overlooked, sometimes for years. An estimated 6 percent of dementia cases may be NPH, which can sometimes be reversed, particularly if treatment is started early. In 2007 a prominent liver specialist at Yale recounted his decade-long decline and subsequent recovery from NPH that had been misdiagnosed as Parkinson’s.
The spine surgeon appears to have been the first doctor to zero in on the possibility of NPH, although MRIs in 2017 and 2018 showed mild to moderate ventricle enlargement.
The radiologist who read the 2022 MRI noted that little had changed since Haft’s 2018 scan, adding that hydrocephalus “may be considered” but that the enlarged ventricles seemed of “doubtful current clinical significance.”
The brain surgeon thought otherwise.
He recommended that Haft undergo an inpatient procedure that involves a series of spinal taps to remove excess fluid followed by close monitoring of her condition.
If she improved, the NPH diagnosis would be confirmed, making Haft a potential candidate for shunt surgery, which diverts excess fluid away from the brain and deposits it elsewhere in the body, such as the abdominal cavity or the heart.
Haft underwent testing in early September.
“Before the spinal tap the disease was running everything,” Heit recalled. “She could barely walk and the bladder incontinence was terrible. We were setting the alarm every two hours [during the night] so she could go to the bathroom.”
Shortly after the spinal tap Haft walked 75 feet down the hospital hallway with little difficulty and no walker. Her incontinence and cognitive function also improved.
“I was just so relieved there was a reason,” she said of the belated NPH diagnosis. The brain surgeon advised her to think about whether she wanted shunt surgery. Success rates vary — some people experience dramatic improvement while others don’t — although an estimated 50 to 80 percent of people appear to benefit. The procedure carries risks including infection and blood clots.
“I didn’t have to think about it,” Haft said. “I wanted it scheduled as soon as possible.”
A few weeks later she underwent surgery, followed by 10 days recovering in the hospital and at a rehab facility.
Haft remains angry that an accurate diagnosis took so long. “It’s just so … depressing,” she said.
Over the years Haft consulted her longtime Manhattan internist Sharon Hochweiss, whom she describes as “a wonderful doctor — she was careful and caring and she listened.” Hochweiss “sent me to great people, none of whom figured it out,” while Haft found some doctors on her own.
Hochweiss said Haft’s case was partly complicated by the multiple explanations for her symptoms.
“There is no way to know how long she had NPH or what it was responsible for,” Hochweiss said in an interview. Early on, her incontinence was attributed to a severely prolapsed bladder, which clearly required surgery.
NPH was mentioned by the radiologist who read her brain MRI in 2022. “As an internist I rely on the interpretation” of specialists, Hochweiss said.
Hochweiss said she lacked medical records from some doctors whom Haft saw without her referral. “I was never given as much information as I would want to have or need to have,” she said.
In a follow-up email the internist said she “will probably be more persistent than before in my efforts to gather information” from these doctors. “This episode has left me sorry that I was not insistent on getting the data that might have allowed me to help establish the diagnosis more quickly.”
More than a year after shunt surgery, Haft still suffers from headaches, occasional dizziness and fatigue, but says that her life has improved dramatically.
She takes regular Pilates and aerobics classes, is able to read without difficulty and has resumed driving, an activity her family had forbidden when her memory cratered. Last summer for the first time in years she was able to plant and tend a garden and last month she danced at a wedding.
“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.”
