Shunts save lives; they also cause more problems for those who need them, when they fail to work as intended. I believe each person with hydrocephalus is entitled to feel the way they do about their treatment option, regardless of what that may be. Our experiences differ and, depending on your own individual circumstances, you’ll either love your treatment option or, you won’t!
In my last blog post, I mentioned that “I’m not a fan of a shunt and, agreeing to have another one put in again after all the trouble I had with my first one, was a decision made after a lot of consideration. So, why did I agree to it? Well, quite frankly; Fear and past experience. I would gladly take an ETV over a shunt, however, my surgery almost a year ago has certainly left me with some anxiety, trauma and hesitation. ETVs are tricky. Brain surgery is risky, as are all surgeries. I fully appreciate that (more so now, than ever before!). The area the surgeon has to navigate through is tight, and “unexpected structures, can get in the way”. Maybe if it weren’t so soon after the last operation, I may have felt differently and opted to have the ETV widened…again. I actually had the choice last week, which is why this was definitely a conflicting decision!
To shunt or not to shunt…that’s not always the question!
I’m no stranger to a VP shunt, as I had one placed shortly after my diagnosis in 2007. However, the neurosurgeon and circumstances surrounding that time, adversely affected how I felt about ALL of it. A proper Hydro virgin; I had no idea what to expect, what to consider or even what questions to ask the neurosurgeon to reach a level of comfort – before, during and after surgery. Thinking back, I honestly don’t know how I managed to stay sane. What I can tell you is, in time, I absolutely despised having the device inside my head just as much as I did, being diagnosed with this condition. It felt like a weight had been dumped on me with no clear instructions, no information or even preparation in the slightest way. A bomb had gone off in my life and I had no other choice but to pick up all the pieces, and deal with the mess, after the fact. Moreover, there was no support offered, something which I think is crucial when you receive this diagnosis and, especially, as you sit down to discuss the offer of brain surgery, as a treatment option. Also, because the likelihood of further surgery is high, I reckon it’s a vital discussion point.
How did I get to this point..?
Just over 2 weeks ago, (working from home) I finished up a meeting and drove myself to the Emergency department at the hospital. This was after calling my neurosurgeon’s room and being told to “Go! Don’t muck around“, as mentioned in a previous post. I honestly didn’t think it would end up leading anywhere, especially not my 7th brain operation. I’ve been dismissed so many times in the past, I expected the same outcome. Go in, get a CT scan (if I’m lucky and not dismissed outright), get some pain medication and ultimately, be told the scan is normal and sent home.
Despite being ghosted countless times before, somehow, you fall down that same rabbit hole…Over. And. Over. Again…
When I ended up having my ETV redone last year, I thought I would be better at spotting the warning signs, should they arise. To be fair, it had been 11 years, 4 months and 2 days since I had the first one done. I guess I was and yet, I also wasn’t. Truth be told, I planned on paying extra attention and was sure I would not let myself down in this regard. You see, when you’re dismissed so many times, you learn to live and survive through the pain, and “accept” the lack of help. That doesn’t mean you like it OR approve of it. It means the level of helplessness to change any of it, increases over time to the point of no return!
Hindsight paints the perfect timeline!
- May 2021 – repeat ETV (brain bleed during surgery left me with cognitive challenges). Enter the FEAR factor when I needed to decide on my next step last week!
- August 2021 – overwhelming feeling of not being able to face another surgery again.
- December 2021 – return of pre-op dizziness lasting a few weeks.
- January/February 2022 – Intermittent headaches.
- March/April 2022 – nausea and partial vision loss, lasting a few hours. Increase in throbbing headache (shifted from left to behind right eye), lasted 3 days and nights – continuously.
Sending out an S.O.S.
I texted my surgeon in December (while he was on holiday) but, got no response (even neurosurgeons need their rest – this I fully understand).
When my vision issues arose, I wrote it down to a possible “migraine“, simply to appease myself. This was despite having a nagging feeling and sobbing like a little girl. However, no amount of freaking out on my part, was useful in calming down what I felt in my gut, to be true…
My lifeline to sanity…
Only those of us with hydrocephalus can fully appreciate this discussion.
As people diagnosed with hydrocephalus, we need to do the following:
- Have a lifeline to sanity, someone you can reach out to, to be your voice of reason. If you don’t have someone, feel free to message me!
- Take better care of and be kind to ourselves.
- Be the change in this hydro world we wish to see!
More on the operation, recovery and agreeing to this particular shunt, next time…
Disclaimer: This post is in no way meant to provide medical advice or dissuade you from your treatment choice/option. It is purely an account of my own experiences, good, bad and everything in-between.