In October, Dorothy Sorlie’s husband, Jim Urness, suggested they pack up their bicycles and go for a ride.
The 77-year-old Sorlie agreed, but she feared she’d be unable to handle hills as she once did.
Riding along the Chippewa River in Eau Claire, the couple saw some rises ahead and doubt filled her mind.
“Not wanting to give up, I increased my pace and guess what,” Sorlie recalled. “(It) took a lot of energy, but I made it all the way to the (High) Bridge. Wow!”
Six months earlier, Sorlie, a biker who loves the outdoors, couldn’t have seen herself completing such a feat.
Then again, she never imagined being diagnosed with normal pressure hydrocephalus, or NPH, and having a narrow piece of tubing inserted into her brain in May.
“I’ve thanked God a million times,” said Sorlie, of Eau Claire, who agreed to share her story in hopes of potentially helping someone else.
“This is not a ‘poor me’ (story), but the need to make others aware of this condition,” Sorlie said about her experience. “If even one person can escape this ordeal, ... my effort (to share information about this condition) will be worth it.”
Two years ago, Sorlie began to feel herself slipping backward as she struggled with a variety of conditions — a declining interest in activities that she loved, including cooking and reading; decreasing mobility; and urinary incontinence.
“My decreasing mobility was blamed on arthritis and my right foot, which needed surgery,” she said. “My lack of interest in many things — I could never find a good book or a great new recipe … — I blamed on pain. The reality (was) that I was unable to concentrate.
“The foot surgery recovery was very difficult, and it was then that the urinary incontinence became a profuse, tough situation.”
Her decreasing mobility also was difficult, and “falling was a constant companion,” she said.
“I began to think this is the way life would be,” Sorlie recalled. “How does one adjust?”
Rather that accept the changes in her life, Sorlie sought many ways to heal, including Eastern, Native American and natural medicine, but nothing helped.
“I kept looking (and) exploring and was blessed with a doctor who also kept looking,” she said, referring to Dr. Kevin Wergeland, an internal medicine physician at Mayo Clinic Health System in Eau Claire.
He sent her for consultative care at Mayo Clinic in Rochester, Minn., and directed her to a movement specialist, Dr. Catherine Schmidt, at Mayo Clinic Health System in Eau Claire, Sorlie recalled.
Schmidt referred Sorlie to Dr. Jonathan Bledsoe, a neurosurgeon, who ordered a CT scan. When she got home that day, she got a phone call: “We found it, and it can be cured,” she said. “I did not respond with happy delirium but rather with ‘Oh, really?’”
Sorlie was diagnosed with NPH. Before that, Sorlie had only heard of hydrocephalus in babies.
The brain and spinal cord are surrounded by cerebrospinal fluid, a clear liquid that is produced and stored in the cavities in the brain, called ventricles.
The fluid’s purpose is to cushion and protect the brain and spinal cord, supplying both with nutrients and removing some of their waste products.
Hydrocephalus is a condition in which there is too much cerebrospinal fluid in the brain’s cavities. This occurs when the natural system for draining and absorbing the extra fluid doesn’t work right.
Hydrocephalus can happen at any age, according to MayoClinic.org, but it occurs more frequently in infants and adults 60 and older.
NPH is a type of hydrocephalus most commonly seen in older adults, according to the Hydrocephalus Association.
An estimated more than 700,000 Americans have NPH, but less than 20 percent receive an appropriate diagnosis, according to the Bethesda, Md.-based association.
Without appropriate diagnostic testing, NPH often is misdiagnosed as Alzheimer’s or Parkinson’s disease, or its symptoms are attributed to the aging process.
In most cases of NPH, it isn’t clear what causes the cerebrospinal fluid absorptive pathways to become blocked, according to a booklet put out by the Hydrocephalus Association.
In his nine years of practice, Bledsoe estimates he has seen three to four patients a year with NPH.
“These patients present typically with three kinds of symptoms — dementia, gait instability and incontinence,” he said. “Unfortunately, several other things can cause these symptoms as well.”
Since joining Mayo Clinic Health System in 2009, Wergeland has cared for four patients with NPH. He credited collaboration among many doctors that led to Sorlie’s diagnosis.
“Dorothy never gave up to find answers for her symptoms,” Wergeland said.
But neither did he, she countered.
A few days after her diagnosis, Sorlie had a shunt — a drainage system consisting of a long flexible tube with a valve that keeps fluid from the brain flowing in the right direction and at the proper rate — inserted into her body.
One end of the tubing was placed in one of her brain’s ventricles, and the tubing was then tunneled under her skin to her abdomen, where the excess fluid could be more easily absorbed.
“In the best candidates for surgery, it is effective 50 to 60 percent of the time,” Bledsoe said. “The result is very dramatic for those who do get better.”
Sorlie expected she “was going to be 100 percent right away.” However, it was several days after the surgery before she regained an awareness. Before returning home, she stayed at Dove Healthcare-South Eau Claire, where she underwent various therapies.
“After treatment, she has thankfully improved and has said this to me many times: ‘I have my life back,’” Wergeland said.
While she’s still a bit of a work in progress, Sorlie is grateful for her support system — husband Jim, their family and friends — and relishing returning to the things she loves like biking, cooking, reading and spending time with her family.
“I am so very blessed,” she said.