In August 2005, Hurricane Katrina hit the north-central Gulf Coast, destroying homes and businesses throughout the region. In the town of Covington, Louisiana, located on the north shore of Lake Pontchartrain, the storm left destruction in its path, although the town didn’t suffer the storm surge that caused so much damage nearby. One family effected by the storm was headed by June and Harry. Harry was a CEO whose business in nearby Mandeville was impacted heavily by the storm. But Harry and his family were already facing a storm of their own at home where, earlier that summer, June had begun experiencing severe headaches, sciatica-like pain, and a shuffling gait.
June went to doctor after doctor, seeking the source of and treatment for her symptoms. “We went to a dozen doctors to find out the cause of her pain and get treatment, but never found anything that helped,” said Harry. Trigger-point injections and oral medications did little to reduce the pain or ease June’s symptoms. Her gait steadily became worse and she began to have problems balancing; these symptoms were diagnosed as resulting from the back pain she had. “Every doctor commented that they didn’t like my gait,” June said.
In January 2006, June received a series of trans-foraminal epidural injections and began physical therapy, achieving some pain relief. However, by March the pain was back and her mobility became even more compromised. She was hospitalized with metabolic disorders, including dangerously low sodium levels. She saw more doctors and testing was conducted on many body systems without diagnosis. Her pain continued, her mobility decreased, and she began to experience incontinence, confusion, irritability, and signs of depression.
“With the effects of Katrina, it was difficult to know if part of the problem was anxiety or depression or something else,” said June’s daughter, Ann, “but these weren’t part of her personality. She was not herself.”
In May 2006 June went to a new orthopedist who told her that she did not have sciatica and referred her to a neurologist. The neurologist tested for Normal Pressure Hydrocephalus (NPH). The results – enlarged ventricles and an abnormal cisternogram – indicated the possibility of NPH, but were not definitive enough for a diagnosis. June began to use a walker and received steroid treatment to ease her pain. Her symptoms seemed to plateau until July, when she was again hospitalized with dangerously low sodium levels and experienced significant loss of mobility. Again, the potential of NPH came up, as her nephrologist suggested the possibility of this disease state as the cause of June’s symptoms.
So a spinal tap was done and plans were made to transfer June to a rehabilitation facility, “to help with her ambulation because by now she was wheelchair bound,” explained Ann. “But she was so much better the next day, 12 hours post-tap, that they would no longer consider her for admission into the rehab and she was discharged to home.” However, just 36 hours later June’s symptoms were back and, in the weeks following, her condition steadily deteriorated. She needed the assistance of several home care services, including a home health aide, occupational therapist, and physical therapist. She was wheelchair-bound and in constant pain. Her other symptoms persisted as well – headache, confusion, memory issues, lack of balance, urinary frequency, and incontinence.
Ann was frustrated by the lack of a diagnosis. “I watched her try to get around and it appeared as if there was no communication from her brain to her legs. She couldn’t do what she needed.” As an example, June added, “If I even just wanted to turn around, I just couldn’t do it.” Ann searched the Internet for neurological disorders and June’s symptoms kept pointing back to NPH. Ann remembered seeing an advertisement about the disease state on television and located the Life NPH website. She said, “It helped give us the information that we needed to continue to fight for this diagnosis regardless of what we were being told.”
In August Harry and Ann brought June to a hospital in Jacksonville, Florida, for a spinal tap. The procedure was done on a Friday, they would spend the weekend in a local hotel, and a follow-up appointment was scheduled for Monday. This time June was videotaped in the office before and after the procedure. The doctor removed 30 cc’s of fluid and afterward, “I got up and walked,” June said. “It was unreal.”
Ann continued to videotape her mother during the weekend. The family noted significant improvement in her walking and ability to turn for the 24 hours following the tap, but then June’s condition worsened and Monday’s appointment found her in her wheelchair again. They reviewed the video with her neurosurgeon and he made a definitive diagnosis of NPH. Two days later a CODMAN® HAKIM® Programmable Shunt was implanted; the 45-minute procedure changed June’s life. HAKIM is a registered trademark of Hakim USA, LLC and is used under license by Codman & Shurtleff, Inc.
Just six weeks later while enjoying their stay at a spa, June and Harry played nine holes of golf. Nearly two years later, “I continue to have no limits on my activity,” June said, who added that regular activity and strength training are key to maintaining her health. June drives, enjoys time with her children and grandchildren, plays bridge and golf, and continues a strength training exercise program, guided by her personal trainer. She has had her shunt adjusted once, after an unrelated MRI necessitated it; this simple, non-invasive task was completed in her doctor’s office.
While most experts say that approximately 375,000 people have NPH, estimates have ranged from about 200,000 to 750,000 cases of NPH. Hospital discharge data shows that only about 11,500 cases a year are currently diagnosed and treated with surgical implantation of a shunt. Since NPH is often mistaken for other conditions, most cases of NPH go unreported and many are left untreated. Only a specialist can properly diagnose NPH. Surgery is not for everyone. There are potential risks and complications; recovery may take time.
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