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Living with hydrocephalus.

A medical condition where the brain is unable to drain the fluid it produces away naturally. The build-up of fluid inside the brain causes pressure and this leads to serious neurological complications and eventually death if left untreated. Treatment is usually managed by insertion of a shunt (a tube to drain the fluid implanted inside the brain)

Diary Of A Suspect Shunt Malfunction: Surgery Next Week! Yay!

September 12, 2013

This is a run-on from the last Diary; it was getting a little long to follow and now I have a treatment plan so I thought it would be best to cover the actual treament/results here, to avoid endless scrolling in the other post!


Yesterday was a bad day.  My head was bad before I went to sleep and I woke up with it feeling just as bad.  Nothing helped it and by nine that morning I was starting to think I’d have to go to A&E.  I called my neurosurgeons secretary and spoke to her, as this is what the hydrocephalus nurse, Simon, had suggested I do if things got bad.  I spoke to her and she told me to go to my GP if possible, given that my local A&E department has not been  great at dealing with shunt problems before unless they were real emergencies, like obvious shunt infections.  My doctor was great; Dad took me there and she wrote a letter to the hospital whilst we were with her, faxed it over and then called them on the phone.  By two that afternoon she called back to say that I was now on the list to be brought in and I’d be hearing from the hospital in a couple of hours, which I did.  They have scheduled me in for admittance next Wednesday.  It’s a week away but they feel confident from my symptoms that it shouldn’t escalate into an emergency before that time.  If it does, I’m to go to A&E and they’ll haul me in from there.  I’m having ICP monitoring done first and then, depending on the results from that, a possible second surgery to correct whatever had gone wrong (if anything) with the shunt.
It’s a great relief; I feel I’ve done my bit.  I’ve tried to avoid the surgery, have taken care of myself, tried a pressure adjustment, rested and taken it easy and now that none of that has made the slightest bit of difference and if anything, I’ve got worse, it’s time to bring the surgeons in!  It’s funny how I was so determined after my thirty-ninth birthday to not have another surgery before my fortieth and now that it looks as though I’ll be having not one, but two surgeries before my fortieth, I’m not bothered in the slightest.  That’s because of the work on the shunt project I’ve done this year.  I’m so grateful to have access to excellent treatment (free treatment too!) and I have the knowledge that if my shunt has kicked the bucket, I’ll get a brand new one instantly, that it makes any inconvenience aspect pale into insignificance.  If anything it’s strengthened my resolve to get back on track with the project as soon as I am well again.
Codman UK contacted me yesterday to say that they hadn’t given up or forgotten but they were now being challenged about the ethics of donating expired equipment to be sent overseas.  Tim Coyne, the guy I am dealing with at Codman, feels the same frustration that I do but is determined to see it through.  That’s why I feel relaxed about it now; we’re on the same page so it will get done, I know it.  But when I get better there is a bigger issue to address; the restricting rules and guidelines which are preventing equipment to be donated and which are effectively contributing to the high death rates overseas need to be looked at and (hopefully) relaxed so donation is a viable option for hospitals, not something staff could get fired for if they participate.  But I’ll worry about that when I’m better.  For now, I have a date and I have some hope of finding out just exactly what my shunt thinks it’s been playing at all these weeks!  That’ll do me for now.

How does it actually feel to have a shunt? – Living with hydrocephalus

August 7, 2013

At the time of this ‘going to press’ (ie 7th August), my own shunt has decided to play up so tomorrow I am going to hospital in London to see my surgeon.  I am keeping my fingers crossed for no more surgery – but I think I already know what the outcome is going to be!  My apologies for not having updated this blog for so long and for probably not being able to update it for a while after today.  I hope to resume to normal service shortly! 

After having yet another discussion with a fellow shuntee about the odd things we can feel/hear with our shunts, I thought it might help to write about them here, in case newly-shunted people are worried about what they might be experiencing.  I am currently on my third shunt in the thirteen years since my diagnosis and I have had two different types; the Codman Programmable and now a Miethke ProGAV.  Both of them have presented different sensations and sounds once implanted.  Some are quite funny, some are a little unsettling at first but all are easier to deal with once you understand what is causing them.
So what does a shunt look like?
It looks like this:

This is a basic model; the valve part (lumpy part) will probably look different depending on what kind of model you have.  (picture courtesy of

This is a basic model; the valve part (lumpy part) will probably look different depending on what kind of model you have. (picture courtesy of

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What’s it really like to have a brain surgery? – Living with hydrocephalus

July 15, 2013

If I had a pound for every time somebody has exclaimed; ‘you’ve had brain surgery?  What was that like?’,  I wouldn’t have to work.  Well, maybe I’d have to work a bit – but I could certainly reduce my hours drastically.  Brain surgery has a stigma surrounding it similar to that of cancer; people fear it.  Even though, like cancer, treatment had catapulted in effectiveness and safety over the years, it still holds a dread for many people and when faced with it, it can be all-consuming.  It’s not surprising really, given the fact that the brain controls your entire body.  To have it once is certainly an experience, a story to tell at the pub.  To have it nineteen times as in my case is, I suppose, a little odd.
I thought I’d do a series of short-ish (I can hear the cheers already) posts on what it really feels like to have brain surgery, to have a shunt inside you, to experience overdraining/underdraining and so on, to give an honest picture of what it’s like for those maybe facing it for the first time or who sometimes wonder if they’re the only ones who feel a certain way.   Although every body is different, my experiences over the years and conversations with the many, many shunted folk I have had the pleasure to meet have taught me that actually, our experiences can feel quite similar, both physically and emotionally.  I’ve linked to some pictures of scars and so on which you may not want to look at, so just don’t click on the links if so.   So let’s start with the big one;

What’s it really like to have a brain surgery?

Well, I’m not going to lie; it’s not exactly fun.  Given the choice of that and a champagne picnic in the park, I know what I’d choose.  But it also isn’t necessarily all that awful.  In fact, in many cases it can be better than you’d hoped.  A lot of what makes it bad stems from what takes place in our minds and we can, to a degree, control that.  This, I have learned, is the difference between having a horrible experience and an okay one.  Yes, brain surgery can be okay.

The days leading up to the surgery itself are important; depending on how ill you are will determine what you’re able to do, obviously, but it’s good to have distractions if you can.  My first ever brain surgery (to install the first shunt), even though it happened thirteen years ago, is crystal clear in my mind to this day.  That’s because I was so damn scared.   My stomach was in knots all the time (this is normal), I lost my appetite (also normal) and wanted to crawl under the bed until it was over (again, normal).  Luckily I was well enough – just – to be driven around in a car so the day before my parents took me for a pub lunch (no alcohol!) to take my mind off it.  It worked.  It was a lovely Spring day and even though the thought of the surgery tomorrow kept looming up at me like a tidal wave, I found myself wanting to and needing to push it to the back of my mind.  So I did and managed a lovely lunch with my family.  Eating is important; keeps your blood sugars steady as well as your blood pressure level and that helps.  It also helps if you can remind yourself of the thousands of people across the world who have brain surgery every single month and who are fine afterwards.  Focusing on the teeny proportion who might be suffer a complication, I found, does not help.  At all.
The morning of the surgery itself I was starving; nil by mouth, obviously!  This doesn’t help the nerves so again, keeping busy is good.  I watched a lot of crap telly that morning.  When I didn’t want to watch telly any more, I read crappy magazines – you know, those ‘chat’ type magazines where people sell their stories of how their breasts ‘exploded’ after surgery and so on.  Some of the stories are so awful (if they are in fact true) that brain surgery suddenly does seem like a champagne picnic in the park.
I did have a complete break-down though, mid-morning.  Suddenly the fear and nerves got the better of me and I bawled like a two year-old, loudly, snottily and unashamedly.  I’d never had a surgery and having seen my dad go through it when I was eleven (he had two brain haemmorhages and a blood clot and very nearly died), I simply wanted to crawl under the bed I’d mentioned earlier.  It didn’t last long though.  Fifteen minutes later and I felt a lot better.   Cry if you need to and don’t worry what others think; also talk to your surgeon/anaesthetist about your fears.  He/she will have heard it all before and be very kind and give you a hanky, the way mine did.

The anaesthetic room
Funnily enough, this scared me probably more than the thought of the actual surgery.  I dreaded it, not having had an anaesthetic before.  I couldn’t see how I could be wide awake one minute and then something would force me to go to sleep the next.  Fast foward thirteen years and the anaesthetic is my favourite part of any hospital stay.  Yes, I’m being serious!  I actually look forward to it!  In the National Hospital, they have special anaesthetic rooms next to the operating theatres themselves, which I prefer.

The anaesthetic room at the National Hospital looks exactly like this one.  I like 'em.

The anaesthetic room at the National Hospital looks exactly like this one. I like ’em.

Operating theatres I find a bit large and scary.  They’re okay; but I prefer the little cosy rooms next to them.  It’s always the same; you lie on your trolley, blanket over you whilst the anaesthetic team take your blood pressure, check your heart rate by sticking those little sticker things you see on ‘Casualty’ over your chest, ask you lots of questions about who you are (they don’t want to knock out the wrong person) and then chat to you about all sorts to relax you and put you at ease.  They’ll put in a cannula if you don’t already have one; that’s a very fine tube in the back of your hand so they can put the medicines in there without having to keep on injecting you.  It’s a pin-prick, really not that bad.  Then the fun starts!  First they (sometimes, not always) give me what they call a ‘painkiller’ which will help relax me.  This might also be given to you as a ‘pre-med’ on the ward.  God, it’s fun.  Seriously good stuff.  It’s like having just had the BEST night at the pub, ev-ah.  I have sometimes started singing after they’ve given me this.  I kid you not.  I sing loudly, too, like I’m hoping they’ll all join in.  Sometimes they do; it depends on who’s in there with you.  Having an anaesthetic truly feels like being very drunk; dizziness, sleepiness, a strange urge to giggle…sometimes you get pins and needles in your face.  None of this is unpleasant, I promise.  A bit strange the first time, yes…but not unpleasant.  I think it’s fab.  The really, really strange thing is ‘waking up’.  I put ‘waking up’ in inverted commas because most of the time I’m not even aware that I’ve gone to sleep and then woken up later.  I usually think I’m still in the anaesthetic room and the staff have just changed over.  It’s that quick and that seamless.  Seriously, you don’t even dream!

The Recovery Room
  This is usually where you’ll wake up.  After nineteen surgeries, I am yet to wake up anywhere other than here.  These rooms are much bigger than anaesthetic rooms but are not as cosy as hospital wards.

It's big, it's echoey and lots of beeps and alarms go off in here.  Meh.

It’s big, it’s echoey and lots of beeps and alarms go off in here. Meh.

To be honest, waking up is not my favourite bit.  Once I’m properly awake, I usually feel a bit uneasy because I don’t know what’s been done exactly during the surgery (sometimes when they ‘get in there’ they have to change their course of action) and I feel all groggy and confused.  My heart rate tends to race and sets all the alarms off but it’s never dangerous; it’s just what my body does after anaesthetic.  As I said before, every body is different so you may well not experience this.  You will shiver because the operating theatres are kept very cool indeed and you’ll have been lying in there for hours.  The nice thing is having the heated blankets put on you, which they have lots of..very toasty!  Your throat will probably be sore from the breathing tube but you should be able to have sips of a drink.  At the National, they always let us have a cup of tea (through a straw) and I swear, it’s The. Best. Cup. Of. Tea. In. The. World.   Nothing ever tastes as good!  Usually I’m pumped full of morphine for the pain so I can still feel pretty woozy from that alone.  As you become more aware as the anaesthetic wears off, you may become aware also of pain and discomfort.  Don’t be a warrior; take the drugs!   After a few hours in the recovery room, once they’re happy with how you are, they release you for good behaviour.  Back to the ward you go.

The first few days
The first day itself you’ll probably feel sleepy but okay.  They pump you so full of painkillers during the surgery itself that it’s relatively easy to keep on top of the pain.  Back on the ward they’ll check your blood pressure, pulse, heart rate and so on every couple of hours.  You can EAT!  Hurrah!  But don’t be surprised if you feel quite nauseous; lots of morphine can do this.  I tend to vomit for hours if I have too much so I try and limit it.  Morphine can also make going to the loo a bit weird; even if you have a full bladder, it seems to not want to come out.  Again, all this is normal but it can be odd the first time!  The physiotherapists or nurses usually try and get you up and about at some point on the first day unless you’ve had your surgery late or if you’re really floored afterwards.  Don’t do what I tend to do and try and go for a walk on your own after five minutes.  I blame the morphine again!  It can make you feel invincible.  I have got into trouble for leaving the ward to go for a walk as soon as I’m back.  Wait until they get you to do it with their help, unless you want to end up in the ‘naughty spot’; right next to the nurses station so they can keep a close eye on you!
The next few days you should (hopefully) start to feel bored with being in hospital.  I say ‘hopefully’ because this is usually a good indicator that you’re well enough to go home soon.  The stitches or staples will probably itch a bit but as long as they’re not oozing or looking infected, that’s fine.  Depending on what type of brain surgery you’ve had, you’ll probably feel some strange and not altogether welcome sensations in your head.  With a new shunt, I feel very tight and stretched over where the new shunt tubing is.  With my first one, I heard ‘gurgling’ in my head which was rather alarming.  Turned out it was just the fluid passing through the shunt valve.  Now the shunts I have ‘buzz’ when the valve works.  Anything that alarms you, tell your surgeon.  Chances are, he/she has heard it all a hundred times before and can reassure you.

The next few weeks
I covered a few points in my post about recovery: click here to read it.  I think the most important thing post-brain surgery is to remember that you’ve had a whopping great operation.  Your brain is going to be swollen and bruised from having someone rummage around inside it.   The anaesthetic itself is a powerful cocktail of drugs and that’s just for starters.  So you’re bound to feel wiped out.  Recovery can be hard; everything hurts, the scars itch like mad, you’re left with half a head of hair and resemble Frankenstein.  I have added a photo of me looking absolutely rubbish post-op to reassure those who feel the same way that you’re not alone.  I’ve also added three photos of scars immediately post-op – the other one’s here – and one taken a couple of weeks later.   Scars like this can look a bit shocking at first.  But you should be proud of every scar; they’re proof that you’ve been through a lot and come through the other side.  Yay you!
As the weeks go on, you’ll feel stronger but don’t push yourself.  It’s very easy to overdo things without realising.  Rest when you need to, don’t rush back to your job too early (I once returned after ten days; stupid, stupid me) and hey, enjoy some R&R!!  You deserve it!  Heck, you’ve just had brain surgery!

Living with hydrocephalus: How to have a nice recovery after a nasty surgery (with a little help from your friends)

May 7, 2013

I found myself thinking about recovering from surgery this week as my landlord (who lives in the property right next to mine) had a fall and ended up in hospital (he’d had a heart attack at the end of last year and a surgery to insert a stent).  He said he was still finding things a little tiring since his surgery and didn’t know why. I reminded him that he’d been through a heck of a lot (he’s 78) and it would take time to get all his puff back and to just take it easy so as not to overly exert himself.  As I said this to him, I could literally feel the big alter-me rising up like a large inflatable blimp from my being, floating above my head, pointing at me and shouting ‘hypocrite!’ in a big boomy voice.  Me giving advice on recovering and taking things easy is like a heavy smoker advising another smoker on what they should be doing to quit.  I have met many, many fellow patients in my months spent on the ward and out of all of them I have never, ever met anyone as impatient as me when it comes to recovery. But I have got better (well, I think!) recently so I thought it might be wise to share recovery thoughts/experiences as it is something that lots of patients who are just out of surgery ask me about.  Recovery is hugely important, both physically and mentally.  It gives you a sense of moving forwards and leaving the bad stuff behind you.  It’s also the bit that people can pay little attention to; often all the focus is on the surgery itself.  The surgery is important of course, but that’s down to someone else; getting over it is up to you.
When a shunt is throwing a bit of a hissy fit and playing up, it can feel as though the majority of one’s life is spent either in hospital or in recovery.  Because of where the shunt is, major surgery can be a rather frequent occurrence and obviously the recovery time for this isn’t exactly a couple of weeks.  This requires a lot of patience when it’s a fairy regular event.  I am not a patient patient.  I am often told (by my parents, friends, surgeons and numerous other healthcare professionals) to rest up and get better following a surgery or even if I’m just having a few bad days.  This is because those who know me well know that I have tendency to run before I can walk when it comes to recovery.  I just can’t stand lying in bed!  Even when I’ve been really ill, so much so that just turning my head a fraction of an inch causes relentless pounding in my head and the room to spin on its axis, I visualise being up, well, back at work and socialising again.  I don’t think this is any bad thing; in fact, I swear it helps me recover much faster than many of my fellow hospital wardians if past stays are anything to go by.  I remember Mr Watkins once coming round to see me on the evening of the day he’d operated on me to see how I was getting along.  He stopped at the foot of my bed and started to laugh.  I was sitting up in bed, sipping a cup of tea and chatting to my parents.  I stopped mid-sip and asked him why he was laughing.  His registrars were also laughing; at me.  This might have made me paranoid had I now known that they’re all lovely people and would never stand there and purposefully laugh at a patient.  But obviously something had tickled them.  He explained what it was; ‘You’re supposed to look worse immediately after a major brain surgery,  not better!  And you’re certainly not supposed to be sitting up in bed drinking tea and chatting’.
‘Ah.  Should I be lying down looking like a ghost and unable to move then?’.
Not quite my style.  I’ve always been a bit of a nightmare for the post-surgical nurses.  The very first surgery I had, when my shunt was inserted, surgery I sat up all night after being returned to the ward from the recovery room as I genuinely wasn’t sleepy and was fascinated by what had just happened; I’d never had a surgery before, not even my tonsils out and here I was having just had brain surgery!  I was seriously impressed with myself (this sense of self-amazement was helped along with a lot of morphine).  I rocked!  So I sat up all night long to chat to the not-really-busy-with-seriously-ill-patients-at-all nurses, all of whom repeatedly told me (very kindly) to sleep and get some rest.  Every single one of the eighteen surgeries I’ve had since has been the same.  As soon as I wake up, I want to get up.  One time I managed to get off my bed only five minutes after having been brought back to the ward and walk – not take the lift – five floors down to the basement cafe because I fancied a cup of tea.  This was also after too much morphine (morphine is dangerous for me; it makes me vomit constantly for hours and also makes me think I am absolutely fine and can go for a walk around the hospital – the combination of these two factors is, naturally, a disaster).  My greatly confused nurse who had just brought me back from recovery returned from getting the blood pressure machine to take my obs to find my bed completely empty.  She checked the loo; nothing.  She checked the whole ward; nothing.  The alarm was raised and I was found eventually in the basement after reaching the cafe and suddenly realising that I felt very sick and very weak.  I may have been very ill but I got a real telling-off (and quite rightly so).  As a precaution (punishment, really) I was placed right next to the nurses desk and the cot-bars of my bed were put up permanently to stop me escaping again.  Even though visualising being well again is, I think, a good thing, going for a mini-trek when you’re one hour out of surgery is not recommended.  They don’t give me as much morphine immediately post-op any more which helps matters a lot; the last few surgeries I’ve been very good when back on the ward and have stayed put until steady on my feet.
It’s not just in hospital where taking it easy is important; getting back home and back to your normal surroundings can be completely confusing.  You’re back in your own bed (yay!), friends are popping round to see how you are, you can flop on the sofa and watch a frankly boggling array of mind-numbing daytime television; recovery at home should be easy!  Of course it’s a little more complicated than that.  After spending an average of a month on the ward per stay, I find that my body and mind have been programmed to hospital life; obs every couple of hours, someone bringing you tea every couple of hours, ready-cooked meals three time a day and your bed made for you each morning.  I live alone by choice but I usually have my Mum stay with me the first couple of days following a biggie surgery; after smaller ones I’m fine on my own.  So she helps me with meals/tea/making the bed whilst she’s there.  After that, I get my own tea.  That doesn’t sound like a big deal but it’s surprisingly exhausting to do after someone’s drilled your head, rummaged around inside your brain, stapled you back together and sent you home.  Here’s where planning is key.  I learned this after my fourth recovery when I’d made the exact same mistakes during the previous three.  I devised a ten-point plan which I shall share here (little plans warrant bullet points; it looks more like a plan then).

  • Don’t do ANYTHING but rest on your first day home; get others to make your tea, your dinner and your bed.  Take your meds.  Sleep.  You’ll need it.
  • Day 2; get whoever is able to help you to help sort your meals for the week out.  I find I crave fresh food when I’m out of hospital (Steamplicity Hospital Meals are actually not that bad – but they’re also not that fresh and you can’t beat heaps of vegetables to feel better quickly).  Get your help to go and buy ingredients to make something easy to freeze and re-heat.  I usually make a massive cauldron of vegetable chilli/curry/casserole, freeze the lot into individual portions and then all I need to do when my help has returned home and I’m too knackered to cook is bung it in the microwave.  Hey presto!  Fresh food every night!  I don’t even get bored eating the same thing for a week – I’m usually too knackered to worry about that.  Failing that, microwave meals, pasta (the sort that cooks in 4 mins) and sauce and jacket potatoes (minutes in the microwave) are all good ideas.
  • Get dressed.  Sitting around in your PJ’s is fine in hospital, but it can prolong your recovery once home.  If you really, really cannot face getting dressed then of course, don’t do it.  But if you think you can manage it, make the effort.  Lying around in old jammies all day long does not make you feel you’re even near recovering; let’s face it, all you really feel like doing when you’re wearing jammies at two in the afternoon is slumping on the sofa watching ‘Doctors’.
  • Try and make your bed.  Mainly for similar reasons to the point above.  You don’t have to do the whole sheet-change thing but just plumping the pillows, pulling the duvet in place after airing the bed for a bit and opening the bedroom window will make you feel less inclined to wallow in it all day long.  The longer  we lie in bed, the harder it can be to want to leave it.  Unless you’re me it seems.  In which case lying in for even five minutes is pure torture.
  • Embrace the internet.  Seriously.  When you’re too exhausted to even have visitors around, Facebook can become a lifeline.  You can chat to all your friends, soak up the get-well wishes and keep up-to-date with what everyone is up to.  It makes you feel included even though you’re physically – for the time being – not.
  • Be selfish.  Don’t be afraid to refuse offers of visits if you’re just not feeling up to it.  This is so important!  Friends and family who may not have seen you for ages will be keen to catch up but just talking can wear you out and give you headaches.  If you need to be alone, be alone. Explain why to those concerned; if they are good friends they will totally understand and look forward to seeing you when you’re actually feeling as up to it as they are.
  • Plan little treats.  Get a supportive friend to drive you to the local park for half an hour so you can sit in the sunshine (she said optimistically, living in the UK).  It makes the world of difference to get a change of scene and some fresh air.  It literally lifts the spirits.
  • Laugh.
    My good friend Chris cheering me up in hospital by standing on his head.  Don't try this at home.  Especially just after brain surgery.

    My good friend Chris cheering me up in hospital by standing on his head. Don’t try this at home. Especially just after brain surgery.

    Not too hard or it’ll kill your head (trust me) but it isn’t called the ‘best medicine’ for nothing.  As soon as you’re able to, get your friends over and laugh.

  • Speaking of friends, really make use of them.  They’ll want to help you, having felt helpless all the time you’ve been ill.  Accept their offers of cooking you dinner/taking you for a walk/bringing a film over for the evening if you feel up to it.  Serious illness can really indicate who are your true friends and sometimes (and it’s no bad thing), indicate those who are not so hot (ah, the promises of ‘I’ll come and visit you!  I’ll help you with anything you need; just say!’ followed by realities of no contact whatsoever for months – we’ve all been there).
  • Don’t forget that the bad, painful days will pass.  This is just recovery and sometimes it sucks.  But it will soon be behind you.  Even if it feels as though you’ll be this weak/in this much pain forever, you won’t.

These points help make the monotony of recovery a little more bearable.   These days, I’m more patient with my body as well.  It’s been through a lot; rushing it isn’t really fair as it’s trying its best, after all.  Of course, you’ll find your own way for coping and getting through it all.  You’ll find whatever works for you.  Whether you’ll have a friend willing to stand on his head in public places to make you laugh is a different matter but if you don’t….I’m willing to lend you mine.

Living with hydrocephalus: Hydrocephalus + Job = Difficult

April 9, 2013

It’s a Bad Head Day.  Most people have Bad Hair Days.  Well, I have those too…notably for about six months following a surgery when the surgical team have shaved off half my hair.  But Bad Head Days are more frequent.  Today’s has been caused by the weather.  My head does not like changes from high barometric pressure to low barometric pressure.  Not only do I feel pretty rough, but I had my boss call me up this morning (I work from home – the only way I’ve been able to hold down a job for any length of time) to let me know that last night, during my work shift, I made four errors.  This is odd for me.  I’m usually uber-careful and double-check everything before I send it off as I am fully aware that a shunted brain doesn’t always produce perfect work.  I double-checked my stuff last night too but seems that it didn’t make an awful lot of difference.

My Sofa: My Friend (on days like these).  Hoshi the cat (curled up on the right) is also My Friend.

My Sofa: My Friend (on days like these). Hoshi the cat (curled up on the right) is also My Friend.

Today I am mainly on the sofa with a throbbing head and feeling glad that I don’t have to go anywhere/talk to anyone (apart from the cat) today.  Well, until I start work tonight.  Holding down a job with this condition is damn hard.  We look fine, we seem fine – and out of nowhere, we can go a bit strange, with no warning.  Working for myself and from home has been a Godsend for me.  It’s literally the only way I’ve managed to always work, throughout the whole thirteen years since my diagnosis, during the periods when I’m not very ill or having surgeries.  I was employed in the years leading up to being diagnosed and for four months afterwards in a high-pressured, high-energy job which I loved.  I loved the buzz, the stress and pressure even and the salary!  It only took three weeks after being back in the office after an absence of seven months (the amount of time it took me to deteriorate, be admitted to hospital, be kept in, have the barrage of tests that ensued, have the major surgery and recover sufficiently) to realise that keeping that job was no longer an option.  I was brokenhearted.  My company were too and very generous and supportive but it was a no-brainer (pun very much intended).
I will post about how I made the transition from Sales Administrator to Vocal Coach another time – it’s a story of determination, thinking outside-the-box, perseverance – nah, not really.  It’s a story of complete panic and desperation.  But the former sounds better.  Right, my brain is positively staging a sit-in protest now (or rather, a sit-on protest; it’s refusing to allow me to move from the sofa) so I’ll post when I’m feeling better.  Which will be tomorrow.  That’s an order, brain.

Living with hydrocephalus: The Hydro Hangover

April 7, 2013

I have a hangover.  This is not good.  Hangovers are never good at the best of times, but when you have hydrocephalus, it’s a bad situation.  I would like to state before I continue that this is a pretty rare occurrence.  I have not become teetotal since my diagnosis; in the early years of my reluctance to accept my new condition I would sometimes go out and purposefully get drunk, as if to say to the rest of the world (but really more to myself), ‘See?  I am just like everyone else!  I can go out to clubs, dance too much, drink too much, suffer too much the next day and get over it!  My life hasn’t really changed completely!’.  Of course the reality was that I would suffer far more than a generally healthy person would and it would take me days to get over it.  Luckily this phase didn’t last.  I snapped out of it quickly enough once acceptance kicked in and since then I’ve been pretty healthy.  But I still have a social drink and sometimes a glass at home in the evening with dinner.  But hangovers – nah.  They’re simply not worth it. For anyone wondering how drinking may affect a shunted brain, here’s the lowdown;

  • Alcohol swells the blood vessels in the brain pretty damn quick; if you’re erring on the side of higher-than-normal pressure anyway (which many shunted folk do), it’ll instantly make your head feel bad.  If you’re erring on the side of slightly low pressure (which I tend to do a lot) it makes no real difference – yet.
  • It doesn’t take much to get drunk.  I mean, hardly anything – two glasses and I’m phone-texting inappropriate people to tell them I love them.
  • Even slight increases/decreases in brain pressure can make you pretty dizzy and it’s worse if you have a shunt.  Falling over happens.
  • The next day, dehydration of the brain means one cracker of a headache.  This isn’t from the brain itself; there are no pain receptors in the brain.  It’s all the surrounding bits which hurt.  The meninges (layers covering the brain) have pain receptors in them.  They also have blood vessels which, during a hangover, are stretched thin due to low pressure, due to dehydration.  When they stretch, they irritate the pain receptors.  The pain receptors wake up and get to work, hurting the crap out of your head.
  • Filling up on water doesn’t help either; the blood vessels in the meninges then get pushed the other way as the fluid gradually returns to the brain, irritating the pain receptors and – you get the picture.

So if hangovers of yore, before I was diagnosed, seemed bad, hangovers now are on epic proportions – even if I haven’t actually had that much to drink.  drinking-booze-courteney-cox-cougar-town-ecards-someecardsNowadays I have a hangover like this one about once or (sometimes) twice a year.  I’m very careful with how much I drink.  Sometimes, though, it just happens.  Like last night.  Friends over, long-overdue catch-up, singing along to music – it was great.  I thought I was doing all the right things; I diluted my wine with lots of ice, drank a non-alcoholic drink every so often, had a pint of herbal tea before I went to bed (not in a pint glass; I’m not a heathen.  I just like really big mugs which hold over half a pint) and it still didn’t make one jot of a difference.  As soon as I opened my eyes, I knew.  Lying still wasn’t going to help.  Pretending I hadn’t actually had any alcohol wasn’t going to help.  NO-THING was going to help this one.  Ouch.