In late 2014, Cathy A. Haft, a New York real estate broker who split her time between Brooklyn and Long Island, began experiencing the first sign of trouble: difficulty reading. At first, she suspected that she needed new glasses, but an eye exam revealed that her prescription had remained largely unchanged.
The problems didn’t stop there. Bladder issues followed, along with impaired balance, intermittent dizziness, and unexplained falls. By 2018, Haft’s condition had deteriorated to the point where she could no longer show properties due to her unsteadiness, forcing her into early retirement.
For the next four years, Haft consulted a variety of specialists in an attempt to explain her worsening condition. It even included cognitive changes that led her husband to fear the onset of Alzheimer’s disease.
In August 2022, Haft, now dependent on a walker, sought help from a Manhattan neurosurgeon. After a careful evaluation of her gait and a review of recent brain scans, the neurosurgeon referred her to a colleague.
Less than eight weeks later, Haft underwent brain surgery for a condition that is frequently unrecognized or misdiagnosed. Fortunately, the operation succeeded in restoring skills that had gradually slipped away, offering a glimmer of hope.
Haft herself expressed astonishment that this disorder is not as uncommon as one might think and that it took so long for someone to piece together the puzzle.
Haft’s journey took a harrowing turn in March 2014 when, while scuba diving off the coast of Cozumel, she experienced a severe episode of vertigo, causing the underwater environment to spin around her. The same terrifying incident recurred the next day, but then gradually subsided. It wasn’t long before she noticed her vision deteriorating and her ability to make sense of storylines fading. She considered getting new glasses, but her eye doctor confirmed her prescription had not changed.
In early 2016, urinary urgency and incontinence became a part of Haft’s life. She underwent surgery for a prolapsed bladder, hoping it would resolve the issue, but the symptoms returned less than two years later. She tried medications with little success and eventually received Botox injections, which helped with overactive bladder.
Balance problems and intermittent dizziness joined the list of issues, making everyday activities like walking challenging. Haft’s headaches, which she had dealt with since childhood, worsened, and a neurologist initially attributed them to migraines.
By late 2018, her difficulties with walking and memory forced Haft into retirement. Frequent falls made her give up her Zumba and yoga classes, and her life took a downturn. Her husband, Lawrenzo Heit, grew concerned that she might be developing Alzheimer’s disease. Her erratic behavior and deteriorating short-term memory were alarming.
In late 2019, Haft began seeing a psychologist for talk therapy after two otolaryngologists ruled out balance-related ear problems. After two months, the therapist suggested that Haft’s symptoms might be psychosomatic, a suggestion that left her in disbelief.
It wasn’t until November 2021 that Haft saw a neurologist who specialized in treating unexplained dizziness. This doctor diagnosed her with benign paroxysmal positional vertigo (BPPV), a common condition that primarily affects those over 50. BPPV occurs when small calcium crystals dislodge and float in the inner ear’s canals, sending confusing signals to the brain about the body’s position. The Epley maneuver, a set of head movements, is a common treatment for BPPV.
However, the Epley maneuver didn’t alleviate Haft’s dizziness. By early 2022, even the Botox injections for her bladder issues stopped working, and her incontinence became distressing.
Between March and July 2022, Haft consulted three more neurologists, each with a different suspicion. The first believed she might have spinocerebellar ataxia, a rare brain disorder, but this was ruled out after further testing. The second suspected a neuromuscular problem affecting her legs, which was also ruled out. The third diagnosed vestibular migraines, prescribed various migraine medications, and administered Botox injections in Haft’s forehead. These treatments alleviated headaches but failed to address her other symptoms.
For over two decades, Haft had been monitored for genetic schwannomatosis, a rare disease causing benign tumors called schwannomas to grow on nerves, leading to severe pain. She had undergone six surgeries to remove tumors and received regular brain MRIs to detect any tumors that might affect her hearing.
In April 2022, an MRI revealed a potential spinal tumor. Haft’s neurosurgeon referred her to a spine surgeon at New York-Presbyterian to investigate whether this spinal growth was responsible for her worsening condition.
However, the spine surgeon did not believe the spinal tumor was the cause. Instead, he focused on Haft’s shuffling gait and the enlargement of fluid-filled cavities deep within her brain, known as ventricles. Sometimes, excess fluid accumulates in these ventricles, resulting in a condition called normal pressure hydrocephalus (NPH), often referred to as “water on the brain.”
NPH’s symptoms can be similar to more common conditions, leading to misdiagnosis. These symptoms include urinary incontinence, memory loss, personality changes, a shuffling gait, and unsteadiness, sometimes mistaken for Parkinson’s disease. It’s colloquially described as “wet, wacky, and wobbly.”
The spine surgeon appeared to be the first to consider NPH as a possibility, despite mild to moderate ventricle enlargement shown in MRIs from 2017 and 2018. The radiologist who interpreted the 2022 MRI noted the ventricle enlargement but questioned its clinical significance.
Nevertheless, the brain surgeon recommended an inpatient procedure involving spinal taps to remove excess fluid, followed by close monitoring. If Haft’s condition improved, it would confirm the NPH diagnosis, making her a potential candidate for shunt surgery, which diverts excess fluid away from the brain.
Haft underwent testing in early September, and the results were promising. Shortly after the spinal tap, her condition improved significantly. She walked without a walker, and her incontinence and cognitive function also improved.
Relieved to finally have an explanation for her suffering, Haft readily agreed to shunt surgery. A few weeks later, she underwent the procedure, followed by a 10-day recovery period in the hospital and at a rehabilitation facility.
While Haft remains frustrated that it took so long to receive an accurate diagnosis, she acknowledges the significant improvement in her life since the surgery. Headaches, occasional dizziness, and fatigue persist, but she has regained her ability to participate in activities she once enjoyed, such as Pilates, aerobics, reading, and even driving. She cherishes the opportunity to lead a fulfilling life once more.
Haft’s case was complicated by multiple explanations for her symptoms, making it challenging to pinpoint the underlying issue. Her internist, Dr. Sharon Hochweiss, had referred her to specialists, but the elusive nature of her condition hindered early diagnosis.
Dr. Hochweiss noted that early on, Haft’s incontinence was attributed to a prolapsed bladder, which warranted surgery. The possibility of NPH was mentioned in the 2022 MRI report, but as an internist, Dr. Hochweiss relied on specialist interpretations.
Reflecting on the experience, Dr. Hochweiss expressed her intention to be more persistent in gathering information from doctors Haft had seen independently, as the episode highlighted the importance of thorough medical recordkeeping.
More than a year after her shunt surgery, Haft still faces some health challenges but has experienced a dramatic improvement in her quality of life. She is grateful for the chance to return to a more active and fulfilling life after years of uncertainty and suffering.