Why We Need #CuresNOW: Living with Hydrocephalus
For every 1,000 babies born in this country, one to two will have hydrocephalus, and over 1 million people in the U.S. currently live with hydrocephalus.
Hydrocephalus is an abnormal accumulation of cerebrospinal fluid (CSF) within cavities in the brain called ventricles, where there is an imbalance between the amount of CSF that is produced and the rate at which it is absorbed. As CSF builds up, it causes the ventricles to enlarge and the pressure inside the head to increase.
There is currently no known way to prevent or cure hydrocephalus and the only treatment option today requires brain surgery. The most common treatment for hydrocephalus—and the most common procedure performed by pediatric neurosurgeons in the U.S.—is the surgical implantation of a device called a shunt. Shunts have some of the highest failure rates of any medical device on the market today.
The Hydrocephalus Association serves as the primary nexus for research on hydrocephalus, and brings advocates together to fight for funding for research on hydrocephalus, with the ultimate goal of finding a cure.
Patients and families with children diagnosed with hydrocephalus face a lifetime of surgeries, and often debilitating symptoms that affect their everyday lives.
Below are excerpts from patients’ stories on living with hydrocephalus-- read their full stories and view others online here.
Rachel K., TN
At 14 years old, my life changed when I started experiencing massive headaches. I’ll never forget sitting in 8th grade science class and not being able to concentrate because my head hurt so bad and my vision was incredibly blurry (both key signs of shunt failure). After this continued for a few days, we visited my neurosurgeon to see if something was going on with my shunt, and sure enough, it wasn’t working. I had brain surgery that same day.
Sharee C., FL
Every day I wake up happy just because I'm alive and able to be mommy and wife. I put on a smile even when I'm in pain and misery. I made the choice to stay instead of leaving this earth. Even if my quality of life pretty much sucks. It is what it is. There's no cure for hydrocephalus. Doctors might treat shunting as a cure. But it's only a treatment. They know it and I know it.
Michelle B., NC
My daughter, Brianna, was diagnosed with hydrocephalus at four months old. We went to her four-month check-up and ended up at the hospital for a CAT scan that day. It was beyond scary. From diagnosis to surgery in just 5 days where she had her first endoscopic third ventriculostomy (ETV) done. That surgery kept Brianna stable for 12 years.
When she turned 12, she spent her birthday in the hospital with a horrible headache. After being admitted twice for migraine cocktails they did a spinal tap and it showed high pressure, her ventricles were unchanged. Her ETV was reopened…
Brianna is now 16 years old. Her cardiologist feels the high pressure from hydrocephalus caused her dysautonomia. This is another issue she faces daily. Her life as she knew it was robbed. We're fighting for more research that connects hydrocephalus to dysautonomia. I'm fighting for others too. We need a cure. We need better understanding.
Zachariah S., MA
One of the absolute worst parts about this disease is the treatment. The shunt has one of the highest failure rates out of all the medical implants on the market today, and it goes into your brain. It's not like it's a bad knee implant, it's a bad brain implant…Living with hydrocephalus has been the hardest thing I ever had to go through in my life. Knowing that there is no cure and every time something goes wrong, it's life threatening surgery on my brain.
Sarah D., NY
Our son became seriously ill with e-coli bacterial meningitis when he was one month old. The cause was never conclusively determined. After spending twelve anguishing days and two brain surgeries in hospital, he was discharged, and my husband and I thought that we could move on with our lives. I will never forget the call I received an hour after my son had his post-op MRI the following month from the radiologist, telling me that he developed hydrocephalus (excess fluid on the brain) as a result of the meningitis and that he would have to have shunt surgery immediately…
I struggle not to be angry that he has to live with this condition and that our family has suffered so much trauma because of it. We try to not think about it and focus on how well he is doing and how much he has overcome. However, the fact remains that no child should experience having major surgery. Thankfully, ours has only had five so far. Yet, we have met children and adults who have had many more surgeries than that, and we know a child who died of it.
We fight for our son and for other families dealing with hydrocephalus by raising money every year for research funding through the Hydrocephalus Association, but it is not enough. We urge Congress to fund more research to find better treatments and a cure. Our loved ones deserve it.
Carol H., NC
Living with hydrocephalus is life-altering in itself. As an adult who knows how hard every single day is, I can't imagine why there isn't more research, advocacy, financial help, and last but not least, education. Families, doctors and the patients who can understand need to know what to expect, signs of [shunt] malfunctions, and no one should ever go months suffering because doctors are afraid to touch them! We are living with this disability every day but no one recognizes it as a disability, it needs to change and hydrocephalus needs to be advocated for all across our country.