Our Story

 

Why we fight Hydrocephalus:   Giving back to an organization that gave us so much

WilliamsFamilyTrish Williams, an Elmhurst resident of 17 years, devoted wife, and mother of four wonderful children began showing symptoms of Normal Pressure Hydrocephalus (NPH) in July of 2013. She was officially diagnosed with NPH and received a shunt in August of 2013.

After a long summer, this shunt seemed to have almost cured Trish. However on February 27th 2014, Trish began suffering from blurred vision. Doctors assumed the shunt was malfunctioning and began to make adjustments accordingly. None of these adjustments seemed to help, and Trish’s symptoms rapidly spiraled out of control and her condition worsened.  Trish lost her ability to walk, talk, and see. Doctors at Elmhurst Hospital and in the Chicagoland area were baffled by her case; her family was left with no answers.

Trish’s dedicated husband, Rick, was determined to find a cure. Rick and Trish journeyed to Mayo clinic to find answers. At Mayo clinic, the doctors ruled out autoimmune diseases and every other possibility of sickness. Ultimately, the doctor’s placed an external drain measuring her cerebral spinal fluid for over 20 days. Rick was a champion advocate for Trish, which led to the doctor to place an endoscopic third ventriculostomy (ETV) in Trish’s brain, and remove the shunt that no longer functioned.

After the ETV, Mayo Clinic released Trish. Sadly, Trish was still unable to move or speak. Rick and Trish spent a total of 52 days at Mayo clinic, away from their family.  Trish returned to Illinois and began a stay at ManorCare in Arlington Heights, IL. Trish’s family and friends from near and far visited her every single day.

At ManorCare, Trish received day-to-day care that the family was unable to provide at home. However, her condition was not improving.  Rick eventually discovered The Hydrocephalus Association of America. After endless phone conversations and a trip to the annual Hydrocephalus Association convention in Portland, Oregon by Rick in 2014, the Association helped put him in contact with Dr. Michael Williams. Dr. Williams is the foremost authority on adult hydrocephalus in the country and was located at Sinai Hospital, in Baltimore.

It was one long month before Trish was given clearance to the hospital as a direct admit. While at Sinai Hospital in August of 2014, Dr. Williams determined Trish needed a shunt in conjunction with her ETV, we all hoped this would be the answer for Trish.

Again with the help of The Hydrocephalus Association, Rick and Trish journeyed to Cleveland Clinic to see Dr. Mark Luciano-Neurosurgeon, the lead doctor for shunt placement in the country. Dr. Luciano and Dr. Williams officially diagnosed Trish with what is known as Low Pressure Hydrocephalus. He placed a new shunt in Trish in accordance with her new diagnosis.

In September, and after three weeks at the Cleveland Clinic, Dr. Luciano sends Trish back to ManorCare in Arlington Heights. Here, she began showing slight improvement with the help of wonderful physical therapists, occupational therapists, and speech pathologists.  We were so close to a cure.

teamtrishAfter painstaking efforts, in early October, Trish is finally accepted into the Rehabilitation Institute of Chicago. Trish begins her stay in late October. After six weeks of constant improvement, she is released home just before Christmas of 2014.

Trish went from being bedridden, to being able to get around in a wheel chair entirely on her own. After 4 months of outpatient rehabilitation at RIC and at-home care, we watched Trish go from wheelchair, to a walker, to walking around independently. Trish truly shows improvement every single day.

Fast forward to January of 2016. Trish cooks dinner every night, spends time with her friends and family, and is currently looking to return to work. What happened to Trish was truly devastating; but what also happened was beautiful. A community came together and with their support, we were able to find her cure. Without the generosity and love from the friends and family – and even strangers from around the world, Trish would not be where she is today.

Now it is time for our family to return the favor to a cause that provided so much – The Hydrocephalus Association. Please consider signing up for this amazing event, benefiting an organization so near to our hearts.

 

DEFINITION OF HYDROCEPHALUS AND RELEVANT FACTS

What is Hydrocephalus?

-The term hydrocephalus is derived from the Greek words “hydro” meaning water and “cephalus” meaning head. As the name implies, it is a condition in which the primary characteristic is excessive accumulation of fluid in the brain. Although hydrocephalus was once known as “water on the brain,” the water is actually cerebrospinal fluid (CSF), a clear fluid that surrounds the brain and spinal cord. The excessive accumulation of CSF results in an abnormal widening of spaces in the brain called ventricles. This widening creates potentially harmful pressure on the tissues of the brain.

Hydrocephalus affects a wide range of people, from infants and older children to young, middle-aged and older adults.

– Over 1,000,000 people in the United States currently live with hydrocephalus.

– For every 1,000 babies born in this country, one to two will have hydrocephalus.

– Hydrocephalus is the most common reason for brain surgery in children.

– It is estimated that more than 700,000 Americans have Normal Pressure Hydrocephalus (NPH), but less than 20% receive an appropriate diagnosis. This is critical due to the fact that it is curable.

 

HydrocephalusAssociation

MORE INFORMATION ON HYDROCEPHALUS

Please visit http://www.hydroassoc.org/ for complete information.

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