On a vacation in Puerto Rico, Susan Morfesi waded into the warm ocean waters, expecting nothing more than a refreshing swim. But when she tried to return to shore, her feet wouldn’t respond. That unsettling moment on a tropical getaway would launch her on a 20-year quest for answers to baffling health problems that only worsened as time passed.
“I went from being very physically fit to being a mess,” she recalls. “If I walked out in the dark, I’d collapse. I would lose control of my bladder. I couldn’t concentrate. I spoke in a monotone voice. My personality changed.” The falls resulted in injuries that included a fractured pelvis, a concussion and broken facial bones.
Over the years, doctors diagnosed Ms. Morfesi with a variety of problems after observing symptoms of dementia. Most told her there was nothing they could do.
Frank Vrionis, M.D., Ph.D
Finally, a Diagnosis for Her Condition
But a fall last April finally sent her to a place where doctors gave her hope — Marcus Neuroscience Institute at Boca Raton Regional Hospital, part of Baptist Health. There she met neurosurgeon Frank Vrionis, M.D., Ph.D., chief of surgery at the Institute.
“Susan had a very treatable condition called normal pressure hydrocephalus (NPH),” he explains. “It occurs when there is a buildup of cerebrospinal fluid in the skull. We all have spinal fluid in our brains. It helps deliver nutrients and eliminate waste, but when there is a blockage or dysfunction that doesn’t allow for proper circulation, the pressure climbs.”
As pressure increases on the brain’s ventricles, the result can be symptoms such as:
· Cognitive and memory function problems
· Spastic paraparesis (stiffness and spasticity in the legs that can result in gait changes)
· Depression and mood changes
· Urinary incontinence
A Disease That’s Easily Misdiagnosed
NPH is most common in adults aged 60 and up, and symptoms vary from person to person. Some 800,000 Americans are living with NPH, says the Hydrocephalus Association, yet it’s estimated that 80 percent remain untreated or undiagnosed.
“It’s easy to miss and patients are often misdiagnosed, believing they have Alzheimer’s disease or Parkinson’s. But what’s important to know is that it is one of the few causes of dementia that is reversable,” Dr. Vrionis says. To diagnose NPH, physicians usually perform a variety of cognitive function tests, MRI or CT scans, and a lumbar puncture or lumbar drainage.
Thankfully, awareness of NPH is on the rise, particularly since superstar Billy Joel announced in May that he was canceling his concert tour because he had been diagnosed with the neurological disorder.
By then, Ms. Morfesi, now 74, had already had surgery to place a shunt in her brain to help drain the excess cerebrospinal fluid into the atrium of her heart, where it is absorbed. Two weeks later, she walked up to the podium and shared her story at Marcus Neuroscience Institute’s annual Brain & Spine Symposium, an educational meeting to bring the latest advances to physicians and other healthcare providers.
“Over the years, I think I had seen eight neurologists without a clear answer,” she says. “When Dr. Vrionis got involved and he said he could do something, I was like, ‘Are you kidding?’”
He wasn’t. Ms. Morfesi’s health mystery was not only solved, but she had a fix.
After 20 Years of Suffering, She’s Back to Her Old Self
Ms. Morfesi’s 20-year journey to better health has been taxing. “Although I’m still in recovery,” she says, “I am my old self. Just two weeks after the surgery, I was popping up out of my chair again. I’m walking so much better. Even people I talk to on the phone say I am different.” Once in a wheelchair, she is now using a walker.
Ms. Morfesi’s sister, Maryann, who has helped care for her sibling throughout the ordeal, sees the progress. “She is walking better than she has in years and her brain is healing. The procedure was a great success.”
Generally, the earlier a patient is diagnosed with NPH, the better the chance of a full recovery, Dr. Vrionis says. The delay in diagnosis for Ms. Morfesi led to the recent development of epilepsy, which doctors hope will be controlled with medication.
“Over 70 percent of patients improve after shunting, but an early diagnosis — before atrophy — will result in a better response,” Dr. Vrionis says. “Susan is doing very well and I am so glad she is on her way back to doing the things she loves most.”