Mahatma Gandhi: “Be the change you wish to see in the world.”
Regardless of whether you’re advocating for yourself or someone you know/in your life who has Hydrocephalus, there’s a teachable moment, no matter how big or small.
While I was in hospital a few weeks ago after my repeat ETV surgery, ICU specifically, I had a few of these moments. I found myself with opportunities to make a difference, not only to the student nurses on rotation but also for anyone with Hydrocephalus, who might cross their path one day.
One common trend amongst the Hydro community is the lack of knowledge about the condition, more specifically, by those who don’t have it. This is true, especially amongst some medical professionals we interact with, regardless of whether they be GPs, admin staff, nurses, neurologists or even neurosurgeons – generally speaking. For whatever reason, their level of skill and knowledge is sometimes questionable and quite frankly, scary. Personally, I’ve found this to be true, regardless of the country I’ve lived in – South Africa, New Zealand and Australia. Accepting or taking it for granted, that any person in the medical field will be able to relate to or recognise the seriousness of your symptoms, and match it to your condition i.e. Hydrocephalus, could prove to be extremely frustrating and challenging at the same time.
I would even go so far as to say, dangerous, especially if they don’t act in a timely manner.
As a person living and diagnosed with Hydrocephalus, I have had to learn as much as I possibly can about the condition, treatment options and (more importantly) the signs and symptoms of treatment failure. It’s not something someone told me to do but rather, something I learnt early on, I had to do. I, myself, used to take it for granted that any doctor or nurse I spoke with, would automatically connect the dots or understand and relate to what I was trying to convey to them. Regardless, it has proven to be a mistake on one too many occasions.
I no longer do this.
Maybe this is unfair on my part (somewhat)? Are my expectations too high..? Mmm…
While in the ICU, I eagerly parted with knowledge about my condition and even explained the different treatment options. It was equally important to me to express the fact that brain surgery is NOT a cure but a treatment option for Hydrocephalus, and one that CAN and DOES fail, at ANY time. I explained:
- What it’s like having a shunt and the different areas of the body it can be rerouted to.
- Why I had an EVD (external ventricular drain) and what the ICP (intracranial pressure) monitor was for. Also, with my constant “unexplained” abdominal symptoms rearing it’s ugly head, I added *Sphincter of Oddi dysfunction to their vocabulary. Pointing out how sometimes, patients can be a little more complex than what you’d expect, meaning, you need to be able to think outside your textbook. One of the students wrote down the name and took the time to go and Google it. She came back, explained it to the nurse on duty as well as her fellow classmate saying, “That’s so interesting!“
- What an ETV (endoscopic third ventriculostomy) is and how it differs from a shunt. (The amount of times I heard people around me struggle with the word “ventriculostomy” at the time, was countless. I remember wondering if I had possibly been given a different treatment option or procedure, which I hadn’t heard of before! I half-cringed each time I heard them awkwardly attempt to pronounce it with each handover).
One of the older nurses was a bit surprised to hear that there are programmable shunts so, I proceeded to explain how a Neurosurgeon could adjust the settings from the outside, “like opening or closing a tap“. It felt good to hear her say: “You’ve taught me something today that I didn’t know. Thank you”.
I invited the students to ask me any questions they might have or ask me about anything they didn’t understand, which they did over the 11 days I spent in ICU. I made sure to explain; “I’m not a doctor but I am a person diagnosed with this condition and, to put myself at an advantage after my diagnosis, I made sure to learn as much as I possibly can. But, I have so much more that I don’t know“. After a lengthy conversation, one remarked: “You should be a neurologist. You just know so much and I’ve learnt so much from you. Thank you!”. I smiled and explained why I wouldn’t want to be a neurologist and continued to explain the difference between them and a neurosurgeon. My example I like to use, from a previous surgeon is, “A neurosurgeon is like a plumber – they fix the broken plumbing. A neurologist prescribes medication to treat the symptoms” and, in my experience, that hasn’t always worked in my favour.
That’s what it’s about, teaching the ones who might one day have to care for you. Where there’s a teachable moment, take hold and use it. Hydrocephalus awareness matters because all of us diagnosed with it, do. More importantly, why not let the conversation start with you..?
You might just make a difference in the process…
*I suspect my abdominal pain is caused by the use of Opioids i.e. Morphine, Codeine, Fentanyl (prescribed while in ICU) – an investigation for another day.