I didn’t quite spot my treatment failure this time, at least not as I would have liked to. My previous shunt, a Sophysa Polaris (A.K.A. Sophy) was placed on 23 April 2022. If only shunts came with a warranty or refund policy. Given their high failure rate, I suppose that would likely be uneconomical. But, it does highlight the frustration of relying on an imperfect medical device.
There were a few contributing factors to why I “missed” it, like:
- I have become so used to not feeling well that I’ve learned to live with it. To be fair, which treatment option would I consider to be the problem; my ETV or my shunt?
- Not being believed and gaslighted in the past by medical staff, family, friends and even colleagues. This is especially true when diagnostic tests, at a point in time, do not correlate to you feeling symptomatic. Whether that be continuous or intermittent is not always taken into account. All of this only leads to further doubt, isolation, and a lack of support from those around you.
- Forgetting what the last treatment failure was like and quite frankly just having a lot of self-doubt.
- Fear. Not wanting to go through another brain surgery as if that’s entirely within my control. Wishful thinking at best!
- Anxiety. Just in case I’m making a big deal out of nothing. Pfft!
De-Ja-Freaking-Vu! Shoves head in sand as the storm approaches. Hopeful that it will just blow over. And, nothing more will be spoken of it.
WHOSE RESPONSIBILITY IS IT?
It left me questioning…
The painfully obvious answer: MINE! The one diagnosed with this condition and living with the hardware, and (literal) hole, inside my head! No passing the buck, I suppose.
Still, I’d like to believe that having a good, informed support system around you is key. Someone who would encourage you to seek medical attention or, at the very least, act on your behalf. If, and should, you be unable to do so yourself. Personally, my life is void of this “someone”. Different rabbit hole, which I will not venture down, but totally relevant, in my opinion.
I knew I needed to find out, even if my assumptions were wrong. Besides, I’d rather be wrong about treatment failure than live with the consequences of my own inaction. Worst case scenario of course rendering my “living with the consequences”, null and void.
I can’t control the reaction of others to my concerns. Yet, I owe it to myself to do the best I can to guarantee my own survival. And no, that’s not being a tad melodramatic. It is in fact the reality I, and countless others around the world, live with…
IT DOESN’T HAVE TO BE BAD FOR IT TO NEED MEDICAL ATTENTION
While I’ve had terrible headaches in the past, the one I had recently wasn’t quite at that level. This is something I normally feel needs to be severe (to my own tolerance level). Only then do I act or even jump to failure conclusion. I guess recent events have blown that theory and stance out of any future equations!
But, for what it’s worth, and the purpose of this post, these were my symptoms and sequence of events that led to my 8th hydrocephalus-related surgery on 23 July 2025.
JOURNAL NOTE – 17 July 2025: Headache this past week. Pain behind right eye. Taking Panadol Osteo, not really helping. Nausea, no vomiting. Dizziness, felt like falling over yesterday while at work. Same when I close my eyes. Left early. Haven’t heard shunt draining lately either, normally do when I get up in the morning, or if I change my head position. Heard it twice since yesterday, maybe intermittent? Low appetite. Feel too nauseous to eat. Lightheaded/vertigo?
IF IN DOUBT, GET IT CHECKED OUT!
I thought I may be making a big deal out of nothing but went against that line of thinking when I reached out to my neurosurgeon’s office. It took a fair bit of overthinking to get to this point. I was given his mobile number by one of his admin staff and called despite it being late in the afternoon. Thankfully, he answered and after listening to my concerns, he told me to come and see him in the morning. I called his office again and was given an appointment for 10:30am.
The dizziness hadn’t eased up though. In fact, it felt more like lightheadedness than dizziness. All the time I kept telling myself that “it’s probably nothing” because I desperately wanted for it not to be treatment failure. However, my gut kept telling me I was wrong and, in hindsight, kept me pushing through the obstacles.
One of note: Past scenes playing again in my head of arguments I’ve had with my husband because I simply had nothing else to go on, other than my “gut feeling”. I’m no doctor, remember…? Ugh!
Choosing my battles has become a skill I’ve had to master. Sometimes that means ignoring the noise, focusing on the problem and possible solution, and putting myself first.
DIAGNOSTIC TESTS DON’T ALWAYS SHOW THE PROBLEM, SOMETIMES YOU NEED TO DIG A LITTLE DEEPER…
At my consult the next morning, we discussed my symptoms again. Dr T then gave me a form to get a CT and X-ray done at the hospital, which is next to the building where his consulting rooms are. He told me to come straight back to see him. The scan didn’t show anything significant in terms of my ventricle size, nor did the X-ray show issues with the shunt tubing. This meant we didn’t have anything else to go on except me saying that I don’t feel well, the lightheadedness, nausea and not being able to hear my shunt like I normally do. Admittedly, at this point I started feeling like the boy who cried wolf (again) and had the internal dialogue to “let it go”.
Thankfully, I resisted this urge and instead asked Dr T if we could do a shunt study to check CSF flow and make sure the shunt is working as it should. He agreed that it was a good idea and there would be no harm in doing it.
Note: I’d never had one done before and only knew to ask because I had read about it while sitting in his waiting room.
For me, this is probably what sets him apart from other neurosurgeons I’ve consulted with. Experience has taught me that at this point I would have been dismissed and sent home with little to no regard for any concerns, or symptoms, treated as phantom creations of my imagination! However, he said I would need to check into hospital on Sunday afternoon to have the shunt patency study done on Monday. It felt like De Ja Vu!
SHUNT PATENCY STUDY REPORT
“FINDINGS: Initial images demonstrates significant reflux of contrast into the ventricles and extending into the CSF space around the spinal cord.
On the subsequent 2 hours delayed imaging tracer reaches the level of the shunt as it enters the peritoneal cavity but with no spillage of tracer. Appearance is highly concerning for a least moderate to high-grade shunt obstruction.
Physiological excretion of tracer within the bladder.
CONCLUSION: Scintigraphic evidence of a least moderate to high-grade distal shunt obstruction with no evidence of spillage of tracer within the peritoneal cavity. Reflux into the CSF space around the ventricles and around the spinal cord noted.”
While I question how, when and why, the valve malfunctioned, I may never know. The bottom line is my shunt valve was not working as designed.
This explanation on the Hydrocephalus Association website sheds some light.
Shunt valve failure due to mechanical malfunction is infrequent. Obstruction within the valve may occur due to the accumulation of proteins and debris. This can impede the valve’s capacity to maintain appropriate CSF flow regulation, potentially leading to either underdrainage or overdrainage of CSF. Shunt valve failure due to mechanical malfunction is infrequent. Obstruction within the valve may occur due to the accumulation of proteins and debris. This can impede the valve’s capacity to maintain appropriate CSF flow regulation, potentially leading to either underdrainage or overdrainage of CSF.
PROCESS OF ELIMINATION AT TIME OF SURGERY
The shunt patency study suggested an obstruction at the distal end (tube in abdomen). However, as explained to me at my consult the Friday before by Dr T, he would systematically identify the issue by going through a process of elimination. After my surgery, he explained that he checked the shunt in 3 parts. In doing so, he determined that there was “normal CSF flow from the ventricular catheter, good flow through the distal catheter“, but the valve was blocked. It indicated that this was all that needed replacing. According to the operation record, it took only 20 minutes from start to finish!
MY ETV CARRIED ME WHILE MY SHUNT MALFUNCTIONED
While my ETV is still functioning, I suspect this may very well have been the reason why I was not in any real danger of going into a coma, or worse. It meant that CSF was still flowing, albeit intermittently.
THIS HAS TAUGHT ME THAT I TRULY NEED TO TRUST MY GUT!
If something feels wrong, it probably is. While hearing Sophy brought me comfort, the irony is this new Codman Certas valve, A.K.A. Cody, does not give me any such sign, which is unnerving. Something I will simply have to get used to, in time.
Someone said if I hear my valve, that’s a sign of failure. I am not too clear on this. It leads me to ask the question. “If that’s true, then does it mean my valve was broken from the start when it was implanted?”. Anyone knowledgeable enough please feel free to enlighten me in the comments, and in doing so, anyone else reading this post.
More importantly, I now know that:
- My symptoms don’t have to be severe before I seek medical attention i.e. my headache doesn’t have to be pounding away.
- Vomiting does not always have to follow nausea, especially not projectile vomiting!
- I should add shunt valve failure to the list of possibilities facilitating shunt obstruction.
- Maintaining a good relationship with my neurosurgeon is crucial to him listening to my concerns and being taken seriously.
Life goes on…
While in hospital, I was let go from my new job after letting them know I had emergency surgery and needed time to recover. Meh! A blog post for another day…I predicted it, but remained hopeful, nonetheless. I choose not to think about it too much right now as I simply have more important things to focus on, like an upcoming scope on Friday, my recovery and these staples coming out tomorrow.
Honestly, I’m not keen on the staple removal, especially since the incision site is still tender in some places. It’s probably also more fear of the unknown as I’ve always had dissolving sutures and never had staples before.
As my brain gets used to this new valve and settings, bending down, laughing, coughing and sneezing sends a shooting pain into my brain. I suspect it’s all part of the adjustment period. I have my post-op CT scan and X-ray booked for the 18th. And my follow-up consult with Dr T on the 1st of September.
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