Hydrocephalus : Let’s talk Incontinence…

Hydrocephalus : Let’s talk Incontinence…

For anyone with Hydrocephalus, have you ever experienced incontinence as a by-product of your symptoms?

Personally, I haven’t so can’t speak from experience.  However, I have read somewhere that when you have a fair amount of pressure build-up, you tend to urinate often.  Just how true this is, I haven’t a clue.

Thinking out loud:  It would seem to suggest that CSF flows to our bladders, meaning it’s a waste product.  Yet, I’ve always thought CSF is useful to the body, which is why it’s redirected via a Shunt or ETV…  I picture it being circulated around the brain and spinal cord, where it serves part of it’s intended purpose…Unless, your body produces way more than you actually need, in which case, discarding of it isn’t all that bad…

Let me be frank, while hopefully not offending anyone, which is never my intent.  Our bodies are unpredictable at best and, in the worst circumstances, they can be the cause of much “embarrassment”.  In saying this though, a lot of it is all quite normal and may just be a case of being caught off guard, as we aren’t used to it.  I’ve recently developed a line of thinking that some situations, no matter how out of the norm, are simply part of our body’s natural reaction to whatever is going on at the time. Admittedly, some things are more gross than others. Some things we’d much rather pretend not to be the case and some, well, there’s just no getting away from it.  So, accepting it is key, before doing what we can to change it – if at all possible. Also, it doesn’t have to be age specific symptoms either. (I don’t subscribe to this way of thinking anyway, not after being diagnosed at age 29, when my doctors described me as being too “young” and not fitting the profile). 

Most of us know that Hydro affects the opposite sides of the age spectrum, the Newly born and the Aged (in most cases).  However, I’m not discounting anyone who is diagnosed in-between, like myself, as I mentioned before.  Along with ageing comes so much, to be written down, as part of this process.  Whether it be forgetfulness, getting confused, shuffling your feet or even falling into things.  You see, the thing about these things (not limited to), is the fact that some/all of these are also experienced by some with Hydrocephalus.  (Not everyone is affected in the same way though, and we all experience the condition differently).  It’s easy to see why there’s a certain degree of “brushing aside” of these symptoms, as part of the ageing process, by medical professionals and family alike.  It brings to mind the countless number of elderly who have reached out to me after receiving their diagnosis.

We may not always like the card life deals us but, we have one of two choices – accept it and deal with it as best you can OR let it consume and “eat” you alive.

This post is on behalf of a Hydro brother in the hope of aiding him with his concerns. He would desperately like to know from anyone experiencing incontinence:

  1. What are your coping mechanisms?
  2. How do you deal with this issue and what strategies do you use to prevent or recover from an “accident“? 
  3. Do you know if it’s related to having Hydrocephalus?

I know we are not medical professionals and most people would probably say, “Get a medical opinionBUT…doctors don’t always know NOR do they think outside their textbooks. And, some are clouded by their God-like complex.

Only when you go through and experience something for yourself, are you able to understand fully…

Sometimes, perspective yields a different reaction from people BUT, one should never have to feel like you need to explain yourself to anyone.  I’ll provide some context nonetheless…

There’s a reason why I feel the need to take this on, on his behalf, and give him a voice.  According to his GP, “Hydro only causes incontinence and balance issues, not lack of focus, memory issues, or learning disabilities”.  (The blind leading the blind..?).

He lost his mum at a young age and therefore doesn’t have much guidance in dealing with the challenges life, and having a condition like Hydrocephalus, throws at him.  He is 26 years old and trying to navigate the adult Hydro world amidst all the obstacles in his way. Maybe it’s my maternal instincts, compelling me to help and be protective or maybe I’m just too empathetic.  Maybe it’s because I can see clearly the disconnect between adult and child Hydro care.  Regardless of all this, the facts remain.

Some time ago, he contacted me with a concern about being forgetful, struggling to learn new things in his job and more importantly, incontinence.  I’m no medical professional, which is why I’m unable to offer him sound advice.  However, I’ve offered him this blog post to see if anyone else with Hydrocephalus has the same issue.  He has a VP fixed pressure shunt which was inserted at 18 months old.  Thankfully, he hasn’t needed more surgery since, which in itself, is a blessing!

Some people have suggested he may be on the Autism spectrum.  Again, I’m not qualified to make such an assessment but I do feel for him.  The only thing I can relate to his situation is, a friend of mine, who’s daughter has a unique genetic deficiency, forgetting to go to the toilet.  Regardless, we are all in this together and I’d like to think that the Support groups on Facebook are a place where people actually get support.  However, I’m not naive, it can become a battle ground slurred by everyone’s opinions.  (Who knows, I may even cop a few disapproving comments because of this post).  Despite all that, I’m hopeful that he can find at least someone who can answer his questions or at the very least, relate and help him find some coping mechanisms or validate what he’s experiencing.

To my fellow Hydro warrior, I say: You are uniquely you.  And, being unique and different isn’t a bad thing.  Though in saying that, I acknowledge that it can be extremely challenging, leaving one feeling isolated and open to ridicule or worse.  As I get older, I see the world differently in the sense that, being unique and different, really isn’t all bad. If anything, it makes for a more interesting world. But, don’t let anyone ever make you feel less than you are.  Challenges will always be part of life’s journey however, it doesn’t mean you won’t overcome them.  More importantly, some challenges don’t have to be faced alone.

If anyone can contribute some useful information or words of encouragement, please feel free to do so.  Thanks in advance.


  • Kathleen Zumbach

    August 19, 2019 at 11:11 pm Reply

    I have had a stroke at 7 months old and hydrocephalus or open lip schizencephaly I’m not shunted I still have all the fluid and do have to deal with incontinence.

    • Skyewaters

      August 20, 2019 at 6:12 am Reply

      I’m sorry to hear that Kathleen. Is there a reason why you haven’t received treatment for your Hydrocephalus?

  • Michelle Tetley

    July 13, 2019 at 5:04 am Reply

    I was diagnosed at 45 years old. Hydrocephalus is a challenging condition to live with. Problems with memory, processing, balance, fatigue, headaches, incontinence and / or many other things. For me, the best thing I have learned is to speak kindly to myself, to take life one moment at a time and to never give up. I wish that all who live with this condition can find peace within themselves and never give up. Find the good in each day and celebrate being alive.
    Here is a link to Modi body undies: this is an Australian site. They are great undies for those with incontinence. Maybe they have something similar in your area, if you need them.

  • Ena

    June 23, 2019 at 11:38 am Reply

    I feel this gp has no idea what they’re talking about . My son experiences all these things he has said is not caused by Hydrodeohalus . He is nearly 5 years old and was shunted at 3.5 yrs old . He has sensory issues , balance , only follows one step instruction , Repetition of 4 times before he will remember / know what to do …
    There is also a big big difference between congenital hydrocephalus and acquired hydrocephalus . My son has acquired , which is essentially a traumatic brain injury . This can cause anything from sensory to learning disabilities and he has a severe receptive and expressive language delay . You cannot be specific with what effect hydrodeohalus will have on you when it comes from a traumatic brain injury . It’s certainly more congnitive then physical !
    Sounds like your friend has acquired if he was shunted at 18 months .
    An adult who acquired hydrocephalus has already learned most things so therefore it is much more likely for them to relearn those things and have them come back to them after a brain injury . But a child especially a toddler hasn’t , and has to try learn them AFTER this trauma has occurred ( pressure on the brain is a trauma if it isn’t noticed straight away )and so that injury causes all sorts of cognitive things like memory loss , confusion and many communication and learning difficulties , when the extent of the trauma on the brain isn’t known . It doesn’t just go away , it needs he right care and OTHER people to change their way of teaching / communicating with the individual . It’s not that hard if you care .and he needs to be open with his boss , a lot of people are more understanding that what people think , it’s probably not something that can be worked around . Extra time … more specific tasks …
    Our son is thriving but with many early therapies , and early intervention , and his schooling will need to be altered to suit his needs , I’m sure it will work out .
    We just have to find and practise other ways to teach what we’d teach to a child without this disability.
    Your friend is not at all crazy if he has acquired his hydrocephalus through toddlerhood . We have found ( with all others as well ) that this is very normal in the children with acquired hydrocephalus .
    As with incontinence , us mums here have found this also very normal , even with the ones with older children . I wish I had an answer for you on this , but all I can say is that we find this common in brain injury hydrocephalus 🙂

    • Skyewaters

      June 24, 2019 at 8:27 am Reply

      Thank you for your comment Ena.
      Your son is fortunate to have you, it sounds like you have armed yourself with enough knowledge to navigate this with him.
      Unfortunately, my friend was let go and is now looking for a job. I’ve told him to read your comment as well.?

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