Hydrocephalus needs more research. For there to be more research, researchers need grants. Generally, grant money comes from public funding. Currently, there's so little awareness of this condition; today only one in every fifty Americans has ever heard of hydrocephalus. How is that so, when this condition affects more than one million Americans? Without increasing public awareness, the current lack research funds designated towards finding a cure will perpetuate.
For those of us from the First Generation of shunts, we're the first people to born with, or acquire hydrocephalus as children, and survive to reach adult-hood. For forty, fifty, or more years we've lived with shunt blockages, failures and multiple surgeries. We've also suffered many differing types of both visible and invisible mental and physical disabilities. The American Taxpayers collectively pay billions a year in healthcare costs related to hydrocephalus. Today, a shunt placement is THE MOST COMMON pediatric neurological surgery.
In the past fifty-or-so years since shunts were invented, the only other surgical advance in the treatment of hydrocephalus is a surgical procedure called an endoscopic third ventriculostomy (ETV) Instead of a mechanical one-way valve, which leads to a drainage tube; an opening is created in the floor of the third ventricle using an endoscope placed within the ventricular system through a hole drilled in the skull.
I'm just now recovering from my most-recent shunt failure, I'm three weeks post-op. I've only ever had nine brain surgeries, and for that I'm very fortunate. Many patients (younger than I) have endured one hundred or more shunt failures which has led each time to a brain surgery.
At my surgical follow-up I asked if I might be a candidate for an EVT. I was alarmed at the increase in brain surgeries I'd experienced recently. I've had three shunt failures in the past three years, including two failures in 2016. My neurosurgeon explained I'm not a medical candidate for an EVT. The meningitis I was born with, damaged membranes responsible for collection, distribution, and absorption of one pint of cerebral spinal fluid produced each day. That process for me is defunct. To be a candidate for an EVT, a patient must have a naturally working CSF distribution mechanism.
As things stand now, I face another forty or fifty-ish years wondering when my next brain surgery will be. Others who also aren't candidates for an EVT (for whatever reason) will bare that crutch with me.
Can you imagine yourself or your child spending every day of your/their lives waiting, and wondering when your next brain surgery will be? No matter how long since your last one; there will always be another.
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