CHICAGO – Hundreds of walkers gathered on the lawn of Soldier Field on Sunday, Aug. 18 to support those that are living and have lived with Hydrocephalus.
Hydrocephalus is a condition that has no cure, and its only treatment requires brain surgery. One to two of 1,000 babies born are affected by this disease.
At the walk on Sunday, we asked some questions of the walkers to better learn their Hydrocephalus story. Sherry Reising, of Oak Forest, was one participant we had a chance to speak with.
What is your Hydrocephalus story?
I was diagnosed at the age of 22, while attending my second semester of college in Minneapolis,MN. In March 1997 I returned to my hometown (of Oshkosh, WI) to have my first surgery. Like most people, no one in my family hydrocephalus before. But the neurosurgeon explained that I would have a shunt put in and that would solve the problem. We didn’t realize that 50% of shunts fail, so three months later when I had to go in for my second surgery, it was a surprise.
After having three surgeries the first year of being diagnosed, I went more than a year with no issues, and took advantage of the opportunity to move to Chicago for my employer (in Oct 1999). Three weeks after moving I was starting to have symptoms of a shunt malfunction. My move to Chicago was the start to a crazy adventure with my hydrocephalus, I eventually had 15+ surgeries between Nov 1999 and Jan 2002. When I went in for another surgery on Jan. 6, 2002 and that shunt malfunctioned before I even left the hospital. I was moved to ICU and spent the next 7 weeks in ICU with an external shunt.
During my near two month stay in ICU, my mother was constantly on the phone with the Hydrocephalus Association (HA). The HA gave her support, encouragement and supplied her with knowledge so she was able to talk with my neurosurgeon with understanding. It was the HA who suggested to my mom that my neurosurgeon look to see if I was a good candidate for the Endoscopic Third Ventriculostomy (ETV) surgery. The ETV surgery was performed at the end of February 2002, and I haven’t had a surgery since.
How has it impacted and altered your life?
Because I wasn’t diagnosed with hydrocephalus until I was adult, the biggest impact for me was socially. Several times I had to have my head shaved which was a constant visual reminder of my illness. It was difficult being a single, young woman who living in the big city away from my family while feeling so different. I was lucky enough to have an amazing group of friends who were a great support and were fantastic at encouraging me, but there were still plenty of moments when I felt like a freak or weirdo. However, I was determined not to be defined by hydrocephalus. I remember having a discussion with my mom and she told me that if all I thought about myself was how I have hydrocephalus, it was all other people were going to think of me too, and she was right. I used the experiences of the surgeries, comas and ICU stay to give me strength and if it made me different than everyone else- it was because it made me stronger.
Have there been any doctors or hospitals that have stood out over the years?
When I first moved to Chicago, I went to a neurosurgeon who, after having symptoms of a shunt malfunction would just do a CT scan, tell me I’m fine and send me home. On THREE occasions, I went home and fell asleep for two or three days and ended up in emergency surgery. Then I met Dr. Batjer at Northwestern Memorial Hospital. I would go to him with the initial symptoms, he would do a CT scan and see the same results- nothing was wrong. But he told me he trusted me and felt that if anyone knew what it felt like when my shunt was malfunctioning, it would be me. On several occasions, he put me into surgery and did a shunt revision, even with a “normal” CT scan. And every time he came in for a post op check- he would tell me I was right. On top of his great sense of humor and friendly disposition, I always appreciated how he valued how I thought and felt.
What do people not know about Hydrocephalus that you think they should?
Hydrocephalus is often a medical condition that isn’t visible on most people. Those of us who have it often struggle with memory, social skills, and other obstacles- but yet we look completely normal on the outside.
What made you want to walk for Hydrocephalus?
I actually started the Chicago Hydrocephalus WALK- first one was in 2005 in a Forest Preserve near Oak Forest. I started it for three reasons:
1) I really wanted to meet someone else with hydrocephalus
2) I wanted to help raise money for the HA since they did so much for me and my family
3) in honor of my mom who was my biggest warrior during the days all my surgeries. In 2007, Stacy Buckner became a co-chairperson and the WALK because bigger ever.
In 2012, I had the opportunity to go to school full time so I stepped down as co-chairperson. Katie Cook along with Stacy Buckner, Andrea O’Shea and Zahadita Kudrna all became co-chairs and have done an amazing job. I still help out the day of the WALK- it’s such an inspiring event to still be a part of. Even if its once a year, it’s encouraging to be surrounded by hundreds who know and understand what life is like living with hydrocephalus. And we are all working to raise money for HA, an organization that also knows and understands and is just as determined to find a cure.
Where do you see yourself in five years?
I hope by then to have my bachelor degree completed, and still enjoying life with my husband and boys.