This case study supports this petition.
My experience led me to create this petition, and I'm sharing my story to advocate for a couple of changes. The petition link will also be at the bottom of this page and I appreciate your support if you feel moved to sign!
I created this petition because of what happened to me, and I'm sharing my story to advocate for change. You can read my experience below, but the petition stands on its own if you prefer to go straight there.
My story here starts with a medical mistake, but this petition isn't about that mistake—it's about how mistakes should be handled with patients involved in their own care.
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There's much more to know about this device and condition, but here's what you need to follow my story.
I have a VP shunt—a medical device that drains excess cerebrospinal fluid from the ventricles in my brain. This treats my hydrocephalus, which is essentially a backup of fluid that can cause the brain's ventricles to enlarge.
A crucial part is that these devices do not drain all the fluid, because you can actually drain too much. That's why shunts have adjustable settings—they're not just open drains, they're carefully calibrated.
A crucial part is that these devices do not drain all the fluid, because you can actually drain too much. That's why shunts have adjustable settings—they're not just open drains, they're carefully calibrated.
My shunt is programmable, meaning its setting can be changed, but only with a strong magnet. Some newer shunt models are less likely to change accidentally, especially from MRI magnets, but mine isn't one of those.
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A flow chart with two words in two different shapes, the word healthcare and the word operations. The flow chart is not readable as a working action plan.
I will not say I know the ends and outs of healthcare operations. But for this topic, I really know the protocol for my medical device. I advocated for myself clearly and repeatedly because I understood the operational protocol. The only thing I was not a part of was reading the X-ray (which is something I can read and involve myself in now).
From an instructional standpoint, I provided the information, which should have reinforced their existing knowledge, and someone signed and approved. I do not know how my setting change was missed, and the verbal confirmation I received was not enough to ensure accuracy in my care. This is why I am ‘asking for a receipt’ by advocating for shunt settings to be documented in patient charts.
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My shunt setting did change during an MRI in May 2019 from 100 to 60, but I was not aware. Despite calling beforehand to ask if radiology could handle this scan and to describe the protocol in detail, they were not prepared when I arrived that day. I insisted, and thought I found someone who understood and they signed off on the plan, but the mistake was made that day.
The only reason these x-rays exist documenting this device change is because I advocated for myself. The timestamped x-rays taken before and after the MRI show my shunt setting changed during that MRI.
Image by Sarah Reed; Left Image of shunt setting before the MRI, center image of patient having the MRI, and right image of shunt setting after the MRI.
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The operational mistake I encountered resulted in overdrainage of CSF fluid by my shunt. This caused symptoms I will briefly describe.
Overdrainage can cause unwanted symptoms. For me, my top complaint was a humming sound, and that sometimes I could not hear, and I sought care for these symptoms. I was at times dizzy, nauseous, sound and light sensitive. A neurologist and an out of state specialist have diagnosed me with overdrainage and are aware of the humming sound symptom in relation to overdrainage. I also learned about this symptom at HA Connect (Hydrocephalus Association) conferences, one of which I traveled out of state for.
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There were hundreds of attendees at this conference (HA Connect), from around the country and even the world. Attendees could be patients, family members of patients, or medical professionals there to answer questions from a patient's perspective. The number of attendees, who go to this conference at an expense, possibly their own expense, speaks volumes about patients' desire and need to receive the best possible information and care. I am very grateful that this organization exists and that I was able to attend.
I am not addressing the lack of patient education from medical providers in this petition, since my goal for this petition is to advocate for a couple of simple standards.
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Now, through great effort, I am back (slightly above) my original setting and I feel so much better. The humming sound was miserable and it took over my life. It was like having a helmet on all of the time, and that helmet was running an AC. The noise was always lower in the morning and got worse throughout the day. This daily progression is common in overdrainage because gravity has an effect on shunts. Less drainage occurs laying down, so I would feel better after sleeping, laying down overnight.
Artwork by Sarah Reed; Image depicts daily increase of symptoms when over-draining CSF.
To give you an idea of my hearing fluctuation, I would place my phone right by my ear on loudest setting, and struggle to hear, while when non symptomatic I could hear my phone from another room.