When there’s a “kink” in the armour….

When there’s a “kink” in the armour….

Shunts, a bone of contention for many people diagnosed with Hydrocephalus. I would almost go so far as to say there’s a divide on the feeling towards this “lifesaving” device. Not everyone feels the love when it comes to them, but we all know that without them, things would be “challenging”, to say the least. Despite how you feel about them, shunts (aside from ETVs, which are not suitable for everyone), are part of the “armour we wear” to manage this condition.

Searching for understanding

You might think there’s no comparison, but I like trying to simplify things to understand them or “wrap my brain around it”, in a manner of speaking. Take shunts for example. I normally think of them in terms of plumbing or, in this case, a garden hose.

When Phoebe shared her struggles with me a while back, it caused me to follow this same thinking process. The post image (shared with permission) clearly shows there’s an issue with her shunt and, it makes sense why she would be symptomatic – at least it does in my simple-minded brain. However, doctors haven’t been so quick to react, leaving her feeling helpless and despondent, at a minimum. She has suffered “continuous headaches, nausea, seizures and lately, fatigue, eyes blacking out and flashing“…yet nothing much is being done.

Needless to say; advising her to go back to the Emergency department at the hospital, is starting to feel like a useless piece of advice, especially since she’s done so a few times already.

I’ve been here so many times. Fighting just to be heard, for someone to take you serious enough to act and just “help”. But I’ve also walked out of those hospitals so many times, feeling deflated, helpless and clueless as to what to do next. Worried about the financial cost of seeing someone privately or not being able to pay for a simple consult in the hopes that it will lead somewhere. However, by the grace of God, I found a way each time.

All whilst being battered, continuously, by the physical effects of the inaction of medical professionals.

So how do you get them to act?

Unless you have access to a surgeon who listens to you, probably when you are unresponsive, something which Phoebe sadly has been in the past. It’s just not right!

The garden hose analogy – “reducing or altogether stopping the water flow”

Kinking occurs when the garden hose is bent along a straight line or a 90-degree angle causing the hose to wrap at the weakest point in the hose. This of course results in reducing or altogether stopping the water flow in the garden hose.” – http://gardenhoseadviser.com/how-to-quickly-get-kinks-out-of-a-garden-hose/

Unfortunately, the suggestions to stop your garden hose from kinking probably won’t work in the case of a shunt. It is understandable though that they do kink because of the amount of slack/coil given upon insertion – it can be seen in the image as well. This allows for growth in children and movement. When I had my shunt placed, I told the surgeon we were considering having another baby and based on this, he agreed that he would ensure there was enough slack to allow for the growth of my baby, when the time came.

I wonder if the kinking occurs due to over and/or underdrainage depending on the current shunt settings and the amount of CSF (cerebrospinal fluid) produced at any given time..?

Worth considering?

Whether this be part of the solution is not for me to say. I’m not a scientist or surgeon. However, it does make me wonder if there is any method to the madness of following a simpler approach, or redesign of the material used.

In general, the thicker the hose, the less likely it is to kink” – https://homeguides.sfgate.com/prevent-garden-hose-kinking-70773.html

Fixing the plumbing

Full or partial replacement of the shunt catheter is, in most cases, the only option to get around the issue. Clogging at either end because of things like brain matter or scar tissue, cause more harm than good.

Even though this is an option, requiring more brain surgery, it’s not always the ultimate solution. Having gone in for a revision before: I personally ended up having a revision, replacement and then ultimately an emergency ETV after having my VP shunt for just over 2 years.

When will they get it right? We need better treatment options!

What I do know for sure is, shunts have been around for decades and somehow, they still manage to have the highest failure rate. Some people (a very select few) have been fortunate enough to not need a revision or replacement of the device, which keeps them alive. However, too many others are on the other side of this equation and endure too many operations in short succession of each other. This is something I wish would change and the one reason why, despite being diagnosed with an incurable condition and having had repeat surgeries myself, makes me reluctant to ever going back to a shunt again. That’s not to say it won’t happen…

My best advice, for what it’s worth…

Keep fighting. Don’t give up. Keep going back or find a surgeon who will listen.


  • Christine

    November 1, 2021 at 10:37 pm Reply

    I thoroughly and heartily agree. We need better options – in fact we need a cure!

    • Skyewaters

      November 1, 2021 at 10:49 pm Reply

      I’ve personally given up on there ever being one. There are just too many causes to have a one size fits all solution. All I know is, shunts aren’t it as there are too many people struggling continuously with it.

  • pjm19606

    October 30, 2021 at 8:00 pm Reply

    Sadly, most neurosurgeons in my experience function as mechanics. Only 3 out of the 10 who have worked on me have spent any time with me outside of performing the surgeries. Better options will remain slow in coming as the current status remains “effective enough” and all concerned from the manufacturers to the doctors, are making a mint off the condition. Yes, I have crunched the numbers and hydrocephalus is a $2 BILLION industry unto itself.

    • Skyewaters

      October 30, 2021 at 11:12 pm Reply

      I would not be surprised! The thought leaves me with mixed emotions, mostly anger. Knowing how this condition affects individuals and families just breaks my heart.

  • Sandra Lawton

    October 30, 2021 at 1:11 pm Reply

    I don’t understand why it takes so much effort to be heard when medical professionals took an oath to “First, do no harm”. There are serious consequences to the level of neglect it seems that many of us have faced. It’s staggering to think of the number of times that I cried to the medical professionals of different professions whom I saw because of the severe amout of pain and pressure in my head, as well as vision loss. The end result could have been sudden death!

    It took me having episodes of blindness (while I was driving and skating(competitively)) and drop attacks before someone took me seriously and even then because I was able to walk into his office and not be passing out in pain with the degree of papilledema that he saw, even he misdiagnosed me initially until a CT scan revealed the severe chronic obstructive hydrocephalus that had been accumulating for at least ten years. He was the only one, after a total of 15 years (the first 5 were intermittent obstructions and behaved more like migraines), who followed a diagnostic protocol. When he showed me the film, my first question to him was “where is my brain?” It was so severely squeezed against my cranium that it was unrecognizable. It then became an emergency situation for a problem that I had been complaining about for years.

    Is it a reluctance to order expensive diagnostics to look for the possible cause? Is it more lucrative to have patients keep coming back and treat them with maintenance medications, like painkillers and diuretics and endless follow-up appointments? Are the insurance companies controlling the diagnoses? Is it easier to slap a diagnosis of “depression” on it because you show up despondent for some relief and treat with antidepressants? Is it Big Pharma making it too attractive for them with incentives to prescribe their drugs and put a pharmaceutical bandaid on something that requires surgery? What is it? It makes ya angry when in the end you’ve suffered tremendous, immeasurable, unrecoverable losses.

    We shouldn’t have to be medical professionals ourselves in order to get the care we need. We should be able to trust those who treat us without having to ask to see their resume and check their references first.

    It would be good to have some professional input here to explain this.

    • Skyewaters

      October 30, 2021 at 11:10 pm Reply

      I wholeheartedly agree with you and am sorry you had to go through that. You’ve asked some very valid questions. I too have asked them and went through the same craziness since my diagnosis in 2007.
      I wish I had the answers but I don’t. I can only speculate and that doesn’t leave a good impression on me.

      Thank you for your comment and sharing💙

Make yourself heard and contribute to the conversation

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