An intro to hydrocephalus. Complete with ideas for a Cream Cracker Challenge and a few pics.

1 Apr

People have been telling me I should write a book/start a blog/document my life in some way for many years now.  I haven’t done so for two reasons; a) I feel embarrassed about being in the spotlight in any situation – self-promotion does not come naturally – and b) the very thing that they have been wanting me to write about has been the very thing that has prevented me from doing so.
I didn’t actually think anyone would be that interested, to be honest. I also prefer to just get on with things when I can and not have to keep dredging up any difficult times.  The ‘thing’ that’s prevented me up till now from doing this and that everyone finds so interesting is hydrocephalus.  Pronounced ‘hydro-KEF-alus’.  Try saying that with a mouthful of cream crackers without spitting any crumbs out; it’s great fun.  The ‘KEF’ bit is in caps because people tend to emphasise that part of the word.

Cream crackers + certain words = juvenile fun

Cream crackers + certain words = juvenile fun

I think it can be pronounced ‘hydro-SEF-alus’ (I gather many people in the States pronounce it as such) but personally I prefer the ‘K’; it’s a bit harsher, which to my mind fits the condition.  There is nothing soft, gentle or fuzzy-edged about hydroKEFalus (I’ll start spelling it properly from now on.  I don’t think it’s a good idea to intentionally misspell words for a long time).  It’s a challenging condition to live with, yet many people don’t really know what it involves.  So I’ll describe it below.  I’ll keep it short and simple as other peoples’ medical stuff can get a bit boring, let’s face it.

THE BORING MEDICAL FACTS (SKIP IF YOUR EYES START CLOSING INVOLUNTARILY)
  • Hydrocephalus is the result of a brain not being able to drain away the essential fluid it produces; the fluid gets trapped inside the brain and pressure starts to build as more and more fluid is produced and trapped inside with nowhere to go.
  • This fluid is called CSF ; for a really fun cream-cracker-challenge, try its proper name; cerebrospinal fluid.  It’s full of nourishing good stuff, drains away brain waste (no, I didn’t know such a thing existed either)
    This is me lil' lifesaver.  The bottom end actually runs all the way down into the abdomen.  And no, that's not my head.

    This is me lil’ lifesaver. The bottom end actually runs all the way down into the abdomen. And no, that’s not my head.

    and cushions the brain from bangs and knocks.  The old adage ‘too much of a good thing’ applies; CSF is a good thing to have in your brain but too much of it can effectively kill you within hours.

  • Symptoms of rising pressure in the brain include worsening headache, nausea, vomiting, double vision and drowsiness…which eventually can lead to coma and death.  Nice.

And that’s about it.  So as I cannot drain this CSF myself, I have something called a shunt implanted in my brain to do it for me.  A shunt is a bit like a glorified drinking straw; it’s a long, bendy tube and sticks straight into the bit of the brain (the ventricles) where the excess fluid is building up.  There’s a valve that can be adjusted depending on how much fluid you want to let out (it lies under the skin on my head – sort of behind my ear) and then it tunnels down my body (I can track it down to just above my right boob and then it disappears) and ends up in my abdomen (peritoneal cavity to be precise), where all the CSF that wasn’t needed anyway is absorbed and drained away.

So that’s hydrocephalus.  I’ve had it for thirteen years now and in that time I’ve had nineteen surgeries for it.  The majority of the surgeries have been to fix/replace the shunt when it’s developed a fault.  Three have been to deal with two shunt infections. The first time, the infection went straight to my brain. The second, it travelled down the shunt into my abdomen.  A shunts fantastic ability to transport unwanted CSF down the body is a bit of a downfall when it gets infected; its design also ensures that it spreads infection like billy-o.

Me with a bolt in my head. It’s an ICP bolt (IntraCranial Pressure) and it measures just that.  It’s a winning look.  I think this could take off.

On average I’ve had a brain surgery every 7 months; when you consider that it takes 2 months-ish to recover from a brain surgery, it doesn’t leave much time to get on with stuff before you start developing symptoms that will require the next surgery.  You also never exactly look your best.  Bad Hair Days become an everyday occurrence.  As does spending more time in your pyjamas than out.  The last eighteen months, however, I’ve been surgery-free; an all-time record.  I am using this rare opportunity to complete my ‘F-List’ – this is explained a little more on the ‘Home‘ page and ‘The 39th Year (And My ‘F-List’)’ post.  To say I feel a bit rushed to get everything I want to get done, done, might be a bit of an understatement.  Every day, I have a sense of my body and mind crying out ‘quiiiiiiiiiick!  Get a move on, before it all starts up again!’.  Not that I think it is all going to start up again just yet.  It’s just that I have been used to grabbing opportunities to get things done in the past on the odd days I feel well, so to have day after day after day of feeling reasonably alright is something I’ve struggled to get used to.  Everyday routine, for me, is a complete novelty.  I work!  Every week!  I can socialise on my good days if I want to!  I haven’t had to cancel last minute on anyone for months!  MY HAIR HAS GROWN TO MY SHOULDERS!!!!!!!!!!  (Can you see which part of my new life is the most important to me?  I have my priorities well and truly sorted).
So….why do the blog?  Here are my Very Important Reasons:

VERY IMPORTANT REASONS FOR DOING THIS BLOG

  1. I have a list of things to do on my F-List which I think will benefit from me blogging about as I go about trying to achieve them.  If I think people are reading about my progress (or maybe, my lack of it), I’ll feel propelled to get the heck on with it.
  2. It may help people who also have hydrocephalus to read the truth about what it involves (waaaaaay too many ‘textbook’ description out there online!) and to also show them that it doesn’t have to completely dominate one’s life.
  3. I need to practice writing stuff if I’m going to get any darn thing published (which is one of my ‘F-List’ goals).
  4. I’m a sheep.  Everyone seems to be blogging so I tend to just want to follow.

So now I had better get on with it.  See, this is why I’m doing this.  What I really want to do now is to go and make some cupcakes which would be a bad idea as a) I wouldn’t get any more blogging done today and b) I’d eat them.  Getting good at making cupcakes is another of the items on my F-List.  Here are some I made for Mothers Day:

I was quite pleased with these as they were my first batch and edible.

I was quite pleased with these as they were my first batch and edible.

.SS
SSSOSSSSS Sod it, I need to make some.  Almond cakes with salted caramel frosting, here we come.

For more posts about what living with hydrocephalus is like, click here.

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18 Responses to “An intro to hydrocephalus. Complete with ideas for a Cream Cracker Challenge and a few pics.”

  1. adventures April 4, 2013 at 11:08 am #

    I can’t wait to start seeing more things you cross off your F-list 🙂

    • jordantheheadcase April 4, 2013 at 4:14 pm #

      Hi there! Thankyou! I am finishing off some more posts at the moment so they should be up by the end of the weekend! I am slightly more hopeful about finishing certain aspects of the list than others, given there are only six months left. 🙂

  2. beckymayrhofer May 28, 2013 at 5:29 am #

    I read your blog on another site and was moved by your writing. You are so eloquent and I so enjoy your blogs. I hope that your F-list is coming along and your cupcakes look amazing 🙂

    • jordantheheadcase May 28, 2013 at 9:11 am #

      Thank you! Funnily enough I’m just about to publish my post about learning to make cupcakes – I can’t say I’ve completed that task as I’m still not happy with them and not confident with it…I’ll probably post it tomorrow so let me know what you think! x

  3. Steve F May 29, 2013 at 7:42 am #

    Hello. I’m 51 years old (52 in June). I discovered only in 2010 that I have hydrocephalus. It’s been there all my life, but it’s never been officially diagnosed (to my knowledge). I’ve had the symptoms (headaches, nausea, lethargy, whistling in ear), but have somehow managed to ignore them I have really found your blog an interesting read, and have added it to my Favourites list. Keep it going.

    Thanks
    Steve

    Lake Cathie, NSW, Australia.

    • jordantheheadcase May 29, 2013 at 8:37 am #

      Hi Steve,

      Thanks for your message. I have a similar situation to yours in that I was also diagnosed in adulthood, after supposedly having had it all my life. The docs think my brain compensated until it couldn’t cope any more and that’s when the symptoms really let themselves be known. Do you have a shunt too? I’ve got some more posts on living with hydrocephalus ready to publish soon so stay tuned. Also, feel free to ask anything you like – comparing notes can be very helpful with this sort of condition! Take care!

      x

      • Steve F July 5, 2013 at 1:43 am #

        G’day (that means “hello” in Aussie) again. I’m enjoying your work very much. Thanks for sharing your experience and knowledge. Just to let you know that I’m booked into a neurosurgeon for later this month for a second opinion on my situation. I’ve been getting the regular symptoms of hydrocephalus (permanent headache, lethargy, nausea) for some time, but the neurosurgeon who put a Rickham Reservoir in me was of the opinion that my symptoms were not due to the hydro. I’ve got some other medical stuff going on at present which I don’t think is related to the hydro, and which I’m being looked at next Tuesday at my local hospital. I’ve been visiting an osteopath for some time now. This lady provides massage in the sacrum and skull with the idea of getting a bit better flow of CSF. I do find that the sessions with this lady provide some relief from headache for about 24 hours or so.

        Anyhow, thanks for your work on this blog. It’s entertaining and informative.

        Take care.

        Steve F

      • jordantheheadcase July 5, 2013 at 2:40 pm #

        G’day Steve! Thanks for the praise. You know what, I truly believe that ‘gut instinct’ counts for a heck of a lot when you have a condition like this. Every time there has been something wrong with my shunt, I’ve known it was my shunt, despite various docs telling me it was migraine/stress headache/headcold/sinus problems. Trust your instinct; if you’re not happy with how you’re feeling, push until you are happy! Let me know how it goes and best of luck with it all. x

      • Steve F September 4, 2013 at 9:46 pm #

        Hi again Jordan. Just to let you know that I do not have a shunt. I had a Rickham Reservoir procedure done in the last twelve months, and the neurosurgeon said that the CSF pressure was not sufficient to justify a shunt and the associated risks. I’m feeling below par most of the time (headache, nausea, lethargy, whistling in ear), but am still doing part-time work.

        I think I’ve had a bit of a breakthrough, though. Because all the medical people I’ve been seeing haven’t identified any medical reasons for my symptoms, I decided to consult a psychologist, to find out whether there might be something going on in my mind. On the very first visit, this lady suggested that, having lived with and most likely been ignorant of my hydro for most of my life, my mind and body have become worn down with trying to battle the unknown for all those years. She is offering some possible alternatives to me working as an employee, and some counselling on what she called “identification” (i.e. discovering who I really am, what goals are realistic for me, etc.). I feel enthusiastic about this lady. I’ll keep you updated.

        Regards,
        Steve F

  4. midnitechild June 8, 2013 at 3:55 pm #

    I love the part about wanting to get everything done before the next issue crops up. That’s definitely something I do! I tend to have a thousand things on the go at once (okay, maybe that’s an exaggeration), just in case I get sick and can’t do something!
    I also got a giggle out of the bit about your hair. I just got my first hair cut in 2 and a half years after the last ‘extreme’ cut left me a bit traumatised. Ahh, it feels good to have a full head of hair!

  5. travelecstasy August 21, 2013 at 8:04 pm #

    I’ve nominated you for the ‘Very Inspiring Blogger award’

    Check out my post to see how it works. http://travelecstacy.wordpress.com/2013/08/21/keeping-the-blogisphere-a-beautiful-place/

    • jordantheheadcase August 22, 2013 at 7:25 pm #

      Thank you very much! I really appreciate it; I shall have a look and see what I have to do. Jordan x

  6. Kevin April 3, 2015 at 4:38 am #

    Hi; I was diagnosed with congenital hydrocephalus a couple years ago after countless test to find out why I suddenly started having seizures. After getting a lumbar puncture (NOT FUN); they found that I had nearly double the normal csf pressure. They tried water pills, those zapped all my white blood cells. So, we went for the shunt. After the surgery, it felt like they broke my ribs, my side hurt soooooo bad. They told me they actually pumpair into the body to separate the skin from the peratonial cavity. OWWWWWW!!! Anyway, worked like a charm.
    My main problem is that I was also born with a arachnoid cyst (basically a pocket of fluid in the arachnoid layer of the brain). My brain is concave at the back of my head. A pocket about the size of my fist. The extra fluid was collecting there and causing even more pressure on my brain. A month before my shunt surgery, the trien to vent the cyst (poke little holes in it). They wound up doing trauma to my cerebellum. So, after that surgery, I had no balance. The neurosurgeon said it should get better. There’s no time frame. The brain heals at it’s own pace. After 3 months without getting better, I went to balance therapy. Now, I’m better than I was before the surgery. I’m more awake. I’m not as moody. My personal “filter” is working.
    Now, a year later, my step daughter (11 years old) is wanting to do a science fair project about it. We live in a small town and a lot of kids are always asking about “WHAT IS THAT!!!”. It doesn’t help that I keep my head shaved. Anyhoo, she;s supposed to make a working model. I was just wondering if you or anyone had any ideas.

    Thanks;
    Kevin

  7. Naledi September 20, 2016 at 9:14 am #

    Hi Jordan!

    I just wanted to say that your blog is an absolute gift. Especially because the two neurosurgeons I’ve been to have almost always left me with more questions than answers. You’re inspiring me to not be so intimidated about speaking about this illness (I’ve had Hydrocephalus for almost 26 years, since I was 2 weeks old).

    Thank you, thank you, thank you so much!

    • jordantheheadcase April 9, 2017 at 12:57 pm #

      Hi Naledi,
      Thank you for you kind words and sorry for the delay in responding. I’m glad the blog is helping; that’s kind of the whole point so I feel reassured when I hear people are benefiting from it. I am aiming to do a lot more posts now so hopefully it’ll be a little more regular. Jordan

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