Dianne's Hydrocephalus Story

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For many years – as many as 20, I think – I had problems walking, standing and generally getting around. Even while I was performing as a concert pianist, I would have trouble walking up the stairs from the orchestra pit to the stage. I was afraid to take a bow on stage without holding onto one of the dancers for fear I would tip over.

After I retired from playing for the Pacific Northwest Ballet, the problems became more serious. It was getting more and more difficult to go up and down the five steps leading to my unit in the condo building, so I stayed inside all of the time and even had food delivered. Twice I fell and had difficulty getting up. After the second fall, Emebet Seifu, who periodically worked for me in my flat, arranged to have her doctor come to my flat!

Then, I fell flat on my back in the kitchen. Thank goodness I didn't break any bones. I crawled to the phone and called Emebet, who came over and called an ambulance. The ambulance took me to the Emergency Department at Swedish Ballard.

After a battery of tests, including a CT scan and an MRI, the doctor admitted me to the hospital. Because I wasn’t really ill, my insurance wouldn’t allow me to stay in the hospital and I was sent to Queen Anne Health Care Center, which was nearby.

While I was at the nursing facility, very good friends suggested I make an appointment with Dr. Repovic, a very fine neurologist at Swedish who specializes in multiple sclerosis. By then, I had concluded I had MS because of the problems I had walking and balancing. Dr. Repovic studied my test results and examined me. He determined I did not have MS. Instead, he suspected I had hydrocephalus – a condition that causes water to collect in the brain’s cavities instead of draining on its own accord. He explained that with hydrocephalus gradually, over time, parts of the body cease to work as they once did. He was fairly confident that this condition was the source of my increasing inability to walk and my poor balance, and why the soles of my feet started to lose the sensation of feeling, which I had noticed when pedaling at the piano. Dr. Repovic thought I needed to consult with a neurosurgeon to determine whether I should have a shunt implanted in my head to regulate the flow of liquid that needed to be drained. He knew a woman who was one of the finest neurosurgeons on the West Coast (Dr. Sarah Fouke) – and called her.

Dr. Fouke agreed to see me. During my initial visit, she decided I should have a lumbar puncture (spinal tap) to help her decide if this surgery would work for me. As you might imagine, this was beginning to sound more and more frightening. But I had the spinal tap and I walked much better! Dr. Fouke concluded that surgery would indeed be good for me. Because I am on Medicare and enrolled in Medicare Advantage, I spent many hours on the phone trying to get my primary-care doctor to make the recommendation (Medicare Advantage required a referral from a primary-care provider for specialty care).

After I received my authorization, my surgery was scheduled for February 14, 2012 – Valentine’s Day! I was admitted to the hospital at Swedish Issaquah, which is where Dr. Fouke practices. It’s a beautiful hospital and the food was excellent! I had many fears about this entire matter, but decided I just wouldn't think about it – and what was supposed to happen, would just happen! That worked for me.

Dr. Fouke said the surgery turned out very well. I first returned to Queen Anne Nursing Home, but then transferred to Klein Gallen. However, Emebet (bless her heart) thought it would be better for me not to be in a nursing home. I couldn't live by myself, though, so her solution was to have me move into her home in Shoreline with herself and her family (her husband Solomon, and her two teenage children).

And so, on March 1, 2012, I moved into Emebet's home ... where I still reside. For several weeks I had physical therapy once or twice each week. The therapists pushed me to walk and to practice going up and down stairs. I no longer need physical therapy. These days I am able to get around with and without a walker. I remember the days when I could not even stand up on my own – let alone take a step. So when I can go into a restaurant on my own two legs and sit in a chair like a normal person, I celebrate these little victories. For me, they are milestones. I remember the first time I went to dinner at Anthony’s Home Port with the entire family. I was able to look out at the water and appreciate the sunset. And, I know the day will come when I can once again drive my car.

I still need to be careful, but there’s been so much improvement. My hairdresser knows about the small lump on my head where the valve is beneath the skin, so he’s careful when doing my hair. And I can see where the tube runs along my neck bone. It’s been a most unusual journey. If anyone had told me 20 years ago that I would be diagnosed with hydrocephalus and have this type of surgery, I never would have believed it.

I have learned many life lessons in this latest journey. Always appreciate what you have – including your health. You never know what will happen. But you have to be able to get up, dust yourself off and start all over again (as the song lyrics say.) I am grateful to get up in the morning – still alive – look out the window at the beautiful trees around here and walk to the dining room for one of Solomon’s breakfasts. I am grateful for my wonderful doctors and for the care and support of this wonderful family, without which I would never have survived.

Dianne Chilgren began playing the piano when she was five years old growing up in Spokane, Wash.

Dianne Chilgren began playing the piano when she was five years old growing up in Spokane, Wash. She studied with the legendary Sari Biro (Hungarian pianist), and received music degrees from the Eastman School of Music at the University of Rochester in New York and Indiana University. Dianne performed in concert halls throughout the world and became the piano soloist for the New York City Ballet, under the direction of famed choreographers George Balanchine and Jerome Robbins. She has worked with many great composers and musicians, including Leonard Bernstein and Michael Jackson, and accompanied many prominent dancers, such as Rudolph Nureyev and Mikhail Baryshnikov. Dianne was the company pianist and piano soloist for the Pacific Northwest Ballet from 1985 to 2011, and has performed with the Seattle Symphony.