Shunts are not for everyone but neither is brain surgery..!

Shunts are not for everyone but neither is brain surgery..!

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).

My symptoms eased up after this and I “relaxed” (kind of).

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.

Having someone you can reach out to, is a godsend!
Patience is something you learn to live with, as you wait for follow up appointments/diagnostic testing.
Where did you get your medical degree from?” Love this response 😂
Self-diagnosis and trying to make sense of what you’re feeling, starts at the onset.
It takes a lot out of you…
The old “stress” card, we all play that game🙈

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.


  • Cary

    May 1, 2022 at 9:55 pm Reply

    My NS refuses to listen to me about the brain fog that I have along with depth perception issues, balance issues, memory issues etc.. I did speak to my PCP and got him to agree to put me under hospice the next time my shunt fails. My NS literally laughed when I ask to be placed in hospice when my next shut failure occurred. I explained to both my PCP and NS how hard it was to have a descent job when you have memory issues. Driving is a problem because I have depth perception issues which limit my night driving severely. I’ve lived in the same county for 46 years and I need a GPS to get around to most places within the county. My PCP gets how difficult it is for me now and as I’ve told him before every surgery leaves me with more and more brain fog, balance and memory issues. What a shock it was to have one doctor laugh out loud and another who listened intently. The NS I have even went as far to say you won’t find a doctor in this entire practice who will go along with your thinking, wow! The problem is social security doesn’t think I’m disabled enough to qualify for disability. It’s horrible to be stuck in the middle of this situation. By the way I’ve had 15 revisions.

    • Skyewaters

      May 1, 2022 at 10:59 pm Reply

      Firstly, I have to validate what you have said. I’ve been there too many times to mention.
      The best advice I can give you is, find another NS. I’m on number 15 in the 15 years that I’ve been diagnosed with this condition. I’ve moved on from those doctors who laugh at you, ridicule for your thinking and outright ignore you.
      I know it might sound easier said than done (I’ll never tell you that it is but, I will tell you it’s possible, having done it myself).
      Trust your gut and do what’s best for you. I wish you all the best💙

Make yourself heard and contribute to the conversation

This site uses Akismet to reduce spam. Learn how your comment data is processed.