Shunt Over-Draining (With a Patent ETV): From Symptoms To Surgery. What You Need To Know.
By Skye Waters
Living with hydrocephalus means constantly interpreting symptoms that can look like many other things: headaches, nausea, fatigue, low mood (to name a few). Over time, it becomes harder to know when something is “just one of those days” and when your brain is signalling that something in your treatment option/s aren’t working as it should. Or, if you’re lucky, it might become easier as a trend emerges.
This is what happened when my shunt began over-draining, despite having a patent ETV, and why surgical intervention was needed. Less than 6 months before, July 2025, the valve was blocked, and needed replacing. Somehow this becomes irrelevant when you know, and understand, that shunts and ETVs can and do fail at any time.
The Symptoms I Woke Up With
A frontal headache behind my eyes that worsened as the morning went on. I developed neck pain, felt nauseous (no vomiting – I never do), and I noticed increasing dizziness. To me, dizziness was a red flag, especially since the last time I experienced it, I ended up needing surgery. I also felt it intensely when I had my ETV redone, a surgery that has certainly left me in a limbo state.
All of these things were alleviated only when lying down at an angle.
Alongside this were more subtle but significant changes:
- Low appetite
- Low mood
- Irritability
- The need to sleep most of the day
Individually, these symptoms could be explained away. Together – and in the context of hydrocephalus, a shunt and/or ETV – they signalled that something in my treatment options was off. Exactly what, was anyone’s guess. The invisible nature of this condition is maddening..!
Like a human symptom detector I assessed myself from head to toe. From what I could figure out, my gut told me that I ticked all the boxes for my shunt over-draining. But I had to be sure…
*It seems with each surgical intervention, the list of (my) trigger symptoms either increase or change slightly. Nonetheless, it always informs what I do next. As frustrating as it is to deal with, I’m learning to recognise what’s considered serious enough to act on my own behalf.
“But You Have a Patent ETV – Why Did You Still Need Surgery?”
Yes, I still have a patent Endoscopic Third Ventriculostomy (ETV). However, having a patent ETV does not mean shunt-related complications can’t occur, as I have discovered.
With my latest surgery, 15 January 2026, the issue wasn’t blockage, as in my previous post. Even with an open ETV, the shunt system can still influence pressure dynamics. Hydrocephalus management is complex, and when you live with combined treatment options (as I do), symptoms don’t always point neatly to one cause. Like I said, maddening…This uncertainty places a heavy weight on the shoulders of the person feeling the physical effects.
How do you prove what you’re feeling, especially when you know that diagnostic tests, in the past, have only ever shown everything as being “normal”? Seemingly a waste of time, resources and money. Good luck trying to convince medical personnel of this, especially the ones who work strictly off of textbook cases.
Why Shunts Can Over-Drain
Shunts are designed to regulate cerebrospinal fluid (CSF) flow and pressure, but they are influenced by posture, gravity, and daily movement.
Over-drainage can occur when:
- The valve allows CSF to drain too freely
- Changes in posture (lying to standing) create siphoning effects
- Pressure regulation is not well matched to your individual physiology
Over-drainage can lead to low-pressure symptoms, which may include:
- Frontal or eye-based headaches
- Neck pain
- Nausea
- Dizziness
- Fatigue
- Cognitive and emotional changes
These symptoms can worsen when upright and sometimes ease when lying down – which is one reason they’re often misunderstood. However, this was a key factor for my neurosurgeon. It almost looked like he was waiting to hear these exact words…I suppose for a neurosurgeon it’s just as frustrating dealing with complex hydrocephalus patients and treatment options that can and do fail at any time.
*Thankfully I always make notes of my symptoms on my phone as they occur because of my short term memory issues. I was able to tell him exactly what I was feeling when he agreed to see me on short notice. I could literally see his eyes and face light up when I read my notes to him.
PS. I now use the HydroAssist app to track my symptoms, printing them out when I have a consult so that I don’t have to remember it all.
Process Of Elimination
After telling him what my symptoms were:
- He pumped the valve a few times, hoping to clear any protein that might be stuck
- Adjusted the settings of my Codman Certas valve (a.k.a Cody) from 5 to 1, and after a few minutes, back to 5
- He told me to keep an eye on it, and if things didn’t improve, to go to the hospital emergency department
These simple changes left me feeling better. Dizziness and nausea were gone. No headache. I was thinking clearly, and felt “alive”, like the fog surrounding my brain had lifted. I even found myself singing on my way home to the music in my car.
While these changes weren’t instantaneous, it was a rather slow progression back to normalcy, and my old self. Unfortunately, it lasted about 2 hours before my symptoms returned ever so slowly. Since it was already the end of the day, I decided to wait and see what the next day would bring. Waking up with a return of all the symptoms, I felt deflated. I called him and we agreed that I should go to the hospital. In that moment, I was truly thankful to have a direct line to him. Something I have not had before with my previous neurosurgeons.
A medley of feelings ensued…
A Smoother Transition
Most people with hydrocephalus know the pain of going to the hospital emergency (sometimes). Truthfully, my experiences over the years have made me reluctant. It’s a place best avoided, if at all possible. Realistically though it’s not exactly a choice that we have. Quite literally forced to succumb to the pressure inside our heads. However, this time was different. My neurosurgeon was aware of my symptoms, as I had seen him the day before, and we had already ruled out a few things. Therefore, all I needed to do was tell the ED doctor, leading to a much smoother transition through ED.
After paying $1,164.90 ($700 hospital excess and $464.90 for the ED doctor consult), I was admitted overnight and added to the surgical list the next day.
When Brain Surgery Becomes The Norm
I already knew the drill of pre-op shower, and everything in-between. The ride down to the operating theatre was all too familiar, especially the cold of a sterile environment, as my bed was wheeled to the anaesthesia bay. I lay there listening to the sound of “Sweet Caroline” playing inside the theatre and medical staff chatting and laughing. Just a normal day at the office for them, I suppose.
Trying to calm my racing heart with deep breaths as anxiety reared its head. I ran my fingers over my shunt valve, said “ goodbye and thank you” to “Cody”, whispered a little prayer, and waited. Making sure not to forget to tell Dr T that I didn’t want staples, which (thankfully) I did.
I spoke with the anaesthesiologist as if on autopilot. I told him just a small dose of Ketamine works best, no Opioids. He was happy enough with this alternative, but warned that some people have reported strange things like seeing spiders on the wall, and while I hate spiders, I was OK with the possibility of phantom ones compared to the severe abdominal pain opioids cause. I signed the consent form, told Dr T he looked tired – asking if he was OK to do the surgery since he clearly fitted me into a busy surgical schedule. He smiled and said he was fine and that I should be a psychologist.
Once inside, I was moved onto the operating table. With the mask over my mouth and nose, the anaesthetist told me to take a few deep breaths. I felt myself choking up, but was thankful for the familiar dizziness, which signalled the descent to slumberland as I fell asleep…
The procedure commenced at 20:20PM and was over by 20:50PM. 30 minutes is all it took. I woke up in the recovery unit before spending the night in ICU. Not my favourite place to be either. It’s noisy and there’s just no rest to be had. Regardless, like coming home, I recognised a few of the nurses from the last time I was there. It was nice seeing familiar faces, under the circumstances. The next day I was transferred to a private room and discharged 3 days later.
Why Surgical Intervention Was Needed
Because my symptoms were consistent with over-drainage, and were significantly impacting my daily functioning, surgical intervention was recommended.
This involved replacing the Codman Certas valve (only) and adding a SiphonGuard to help stabilise pressure changes.
It wasn’t about the shunt “failing” in the sense of being blocked or broken. It was about fine-tuning a system that was no longer well matched to my body’s needs.
What a SiphonGuard Does
At the time of my symptoms, I did not have a SiphonGuard in place. During surgery, one was added along with a new shunt valve.
A SiphonGuard is an anti-siphon device designed to reduce over-drainage, particularly when moving from lying down to standing. It helps counteract the effects of gravity that can cause CSF to drain too quickly.
In practical terms, it aims to:
- Reduce postural (upright) headaches
- Stabilise pressure fluctuations
- Protect against low-pressure complications
It’s not a cure-all, but it adds an important layer of protection for people prone to over-drainage.
The Invisible Part of This Experience
One of the most difficult parts of this experience wasn’t just the physical symptoms – it was the uncertainty. The second-guessing is tiring.
Being told symptoms may be “psychological” is a common experience for people with invisible neurological conditions. The end result, over time, leads to self-doubt and delayed care.
Learning to trust your body, while navigating medical systems that don’t always validate invisible symptoms, is an ongoing challenge. While none of us diagnosed with hydrocephalus want to have brain surgery, we know it’s not exactly a choice. However, when presented with this option, especially knowing the potential of surgery alleviating debilitating symptoms (i.e. we need it), it undoubtedly will be one we opt for. Because quality of life, for what it’s worth, means something – I suspect any reasonable person would want the same…
Final Thoughts
Living with hydrocephalus, a shunt, and/or a patent ETV means living with complexity. Over-drainage is less talked about than blockage or infection, but it can be just as debilitating. As is under-drainage.
If your symptoms don’t fit neatly into textbook descriptions, that doesn’t mean they aren’t real. While this has been my experience, it may differ from yours, or not. The information in this post, and on this website, is for awareness and educational purposes. It is not a substitute for medical care. Should the need arise, always speak to a medical professional.
Remember: Your lived experience matters – and sometimes, small mechanical adjustments can make a meaningful difference to (your) quality of life.
Since my surgery a few weeks ago, I have still been experiencing headaches and nausea. At times it felt like I was fluctuating between over and under draining, if that’s even possible. Annoying! While it’s not constant, thankfully, I have taken notice of it. At my 6-week post-op consult on Tuesday, my shunt was adjusted to setting 4. We’ll see if my brain likes this setting better. Time will tell.
Future Post (Teaser)
The possibility of implantable brain pressure sensors to help detect changes earlier and reduce the constant second-guessing of symptoms. I hope to explore that in more depth in a future post.
