Olga

I was 62 and in good health. Suddenly, I began experiencing problems with my balance. Whether walking to my car, sitting in my armchair, or standing in front of my house, I would unexpectedly find myself on the ground or face down in the grass.

After a few falls, I went to my doctor where they ruled out several problems. Then, they proceeded to ask me what I thought. This was my first experience of experts expecting ME to diagnose and treat myself.

Unfortunately, I had to initiate discussions with my doctor and physical therapist to develop a plan for my treatment and recovery. I advocated for starting physical therapy (PT) as the initial step. Despite three months of dedicated efforts with my supportive physical therapists, my balance showed no improvement. Subsequently, I decided to seek additional evaluation and testing from a neurologist. While my journey with NPH has had its challenges, I remain hopeful that more primary care doctors will become familiar with NPH symptoms, thus helping patients like me avoid the early frustrations I encountered.

My neurologist ordered several tests and referred me to neurosurgery. Upon hearing this, I thought to myself, “Neuro…. SURGERY? Brain surgery? Oh my gosh!”

After undergoing a lumbar puncture (LP) and another MRI, I relied on insights from the HA Normal Pressure Hydrocephalus (NPH) Network Facebook group to know that I should record a video of myself walking after the procedure. This turned out to be crucial. Following the lumbar puncture, there was a significant improvement in my walking ability. However, the improvement was not evident until the following day, and unfortunately, it had disappeared by the time I had my follow-up appointment with my neurosurgeon. Without the home video, I might not have been recommended for a shunt.

By the time I had my follow-up with my neurosurgeon, my symptoms were rapidly worsening. I noticed a decline in mobility occurring almost every few days, prompting me to rely on mobility aids such as a cane and later a walker. Additionally, I experienced frequent urinary urgency, which disrupted my sleep, leading to waking me up every two hours.

Alongside disrupted sleep, I struggled with anxiety, depression, fear of falling, and fatigue. Constantly needing to plan my movements and activities became exhausting. Simple tasks required careful consideration; questions such as “Do I need my walker?” and “Can I move from room to room while holding onto furniture?” became routine. Furthermore, I had to ensure my walker would fit in my car and have an adequate supply of continence products for outings.

Additionally, I had to consider the energy required to go out and enjoy my time with family and friends.

Fortunately, my shunt surgery went very smoothly. Much to my surprise, I experienced minimal pain, aside from occasional abdominal twinges that persisted for several months. Recovery from the placement of the ventriculoperitoneal (VP) shunt was much easier compared to my hysterectomy several years ago, which required 6 weeks of recovery. I was feeling better within a few days after my shunt surgery!

I was angry though that my symptoms did not immediately disappear post-surgery. Despite being two weeks post-op, I still felt unsteady and relied on the walker. To cope, I began seeing a counselor on Zoom to avoid burdening my husband with my concerns.

After two weeks of continued reliance on the walker, I insisted on seeing the neurosurgeon. His physician assistant (PA) explained that the brain needed time to heal, and it was their policy not to offer adjustments or therapies until a month post-surgery.

Finally, at the one-month mark, they adjusted my valve setting from a four to a three.

I am thankful for the Facebook group, where I could ask questions and learn from the experiences of others living with normal pressure hydrocephalus (NPH). When I inquired about the valve settings, members explained that a lower number indicates that the shunt will allow more fluid to drain, while a higher setting restricts the flow of cerebrospinal fluid (CSF).

Also, at the one-month mark, I was cleared to begin PT. Fortunately, I found a neurologic physical therapist (neuro PT), a subspecialty that I hadn’t known about before. During our initial appointment, she asked about my goals, and I expressed my desire to attend my son’s wedding in November without relying on my walker.

To make a long story short, by October, I was able to stop using my walker. I danced at my son’s wedding and even traveled overseas alone in March!

Now, at 64, a year after shunt surgery, I am fully independent, have traveled abroad twice, and resumed my hobbies (theater, ESL, taking care of my granddaughters). Life is great!

Nobody knows what the next chapter will bring. Hydrocephalus is a lifelong chronic condition, and there may be challenges along the way. However, I am determined to live my life to the fullest!

I’d like to end my story with some advice for anyone reading this. First, educate yourself about your diagnosis. Books such as “Normal Pressure Hydrocephalus” by Adam Mednic, PhD, MD or “A Life Not with Standing” by Chava Willing Levy were helpful for me. Additionally, it’s okay to get a second opinion if you feel your current doctor isn’t the right fit for you.

As you navigate these medical appointments and consultations with specialists, having a trusted companion to accompany you to appointments can be immensely helpful. They can take notes, ask questions, and support you throughout your journey.

Remember, it’s ok to ask for and receive help. It’s also ok to acknowledge your fears, grief, and depression. Seeking professional assistance is a courageous step towards healing.

Take advantage of the resources available to you, both locally and through organizations like the Hydrocephalus Association (HA).

Lastly, never forget to seize the day – carpe diem!

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