Karen

About 4 years ago, I began to notice that I was having frequent headaches. I have very severe COPD and use supplemental oxygen, so I just assumed that my need for additional oxygen was increasing, even though the numbers on my pulse oximeter didn’t confirm that. 

After a few months, I began to have difficulty walking. My feet felt as if they were magnetically attached to the floor. I felt as if I were falling forward when I took a step. I also felt very unsteady, and when I turned around, I got dizzy and felt as if I was going to fall. 

My primary care physician thought at first that physical therapy (PT) might help–but it didn’t. Then I saw an ear, nose, and throat specialist, but that made no difference either. After about three or four months of nothing helping, she ordered an MRI of my brain. The radiology report noted enlarged ventricles and raised the possibility of normal pressure hydrocephalus (NPH). 

She referred me to a neurologist who scheduled a cerebrospinal fluid (CSF) lumbar puncture drain. He asked that someone record a video of me walking the day before and again right after the procedure so he could review the footage and see if there was a difference.  I then met with a neurosurgeon and scheduled surgery after discussing my options: 

• Do nothing, and most likely end up incontinent and with dementia
• Have a lumbar puncture about every 6 months to drain the CSF 
• Have a ventriculoperitoneal (VP) shunt placed 

Even though the thought of having brain surgery and a hole drilled into my skull wasn’t something I particularly wanted, the alternatives seemed worse, much worse to me. My surgery was set, but ended up being postponed for about 6 months due to COVID. The hospital wasn’t accepting any overnight surgeries unless they were emergencies, which mine was not. Once surgery was finally scheduled in March of 2022, my daughter came to stay with me and was a great help. I stayed one night in the hospital and then recuperated at home for a few days. 

My symptoms improved almost immediately. I was able to walk without lurching, my headaches started to fade, and with PT, I gradually began to feel like myself again. I have a Medtronic Strata II shunt, set to 1.5, but it took a couple of adjustments to reach this setting, which seems to be working well for me now. Because I have several comorbidities (other conditions) —such as COPD, vascular deficiency, osteoporosis, GERD, and high blood pressure —it can be difficult at times to determine whether a symptom like a headache is caused by NPH, COPD, or my blood pressure. 

I was very grateful to have received financial aid to attend HA CONNECT, the Hydrocephalus Association’s (HA) National Conference on Hydrocephalus, in Tampa in the summer of 2024. There, I met many people like me, living well with NPH, who are involved in advocacy, education, and outreach to bring awareness of NPH to others. 

Prior to the summer of 2021, I had never heard of NPH, and none of my friends or family had heard of it either —until I was diagnosed. But now, with Billy Joel recently being diagnosed, I hope there will be much more awareness of this condition—especially since up to 5% of people diagnosed with dementia could have NPH. 

I’ve become involved in advocacy through HA because I feel that it’s important for our elected officials to hear our stories, to know how living with NPH affects our lives, and how research funding benefits the entire hydrocephalus community. 

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