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

7 May

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?’.
‘Yes!’.
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.

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

  1. streetgirla May 7, 2013 at 1:16 pm #

    You sound just like my best friend he has hydrocephalus to. He never rests when he needs to ether. Unlike you he hasn’t excerpted he needs to slow down. So I constantly have to play bad cop but he always admits I’m right in the end
    Great post xxx

  2. midnitechild May 11, 2013 at 8:50 am #

    Reading this gave me a laugh as it reminded me of what I’m like post-op. I’m usually completely out of it for about 6 hours (I don’t do well with general anaesthetic), but after that it’s all go! My neurosurgeon recommends that shunted patients stay laying flat for 24 hours post-op, which I’ve got it down to 12, and a 3 day hospital stay, which I’ve managed to get down to an overnight stay. I think they finally figured out that I was slowly driving all of the neurosurgery nurses to insanity! And as for resting when I get out of hospital, screw that! Last time I had a shunt revision I wanted to go to the pub the night I got out!

  3. ginapoet November 7, 2013 at 12:48 am #

    Thank you so much for your post here. I just got out of kidney cancer surgery and needed a boost when I came across your blog. Keeping a good disposition post surgery can be a trial- I see you’ve done it many times so well. Thank you for encouraging the rest of us.

    • jordantheheadcase November 7, 2013 at 11:03 am #

      Hi, wow I hope you’re doing okay! Glad to know my post helped; I’m recovering from a month spent in hospital too at the mo so I’m practicing what I preached, lol! Really hope you recover quickly and get back on your feet asap. x

      • ginapoet November 7, 2013 at 4:46 pm #

        Thank you so much!! You, too!!!

  4. Themba Masilela November 24, 2015 at 8:10 am #

    HEY GUYS MY NAME IS THEMBA I AM FROM SOUTH AFRICA I AM 20 YEARS OLD AND I WAS DIAGNOSED FOR HYDROCEPHALUS AS A KID… I HAVE HAD A SHUNT (NOT SURE WHAT TYPE IT IS) FOR 12 TO 15 YEARS NOW AND HAVE NEVER HAD A PROBLEM WITH IT ALSO I HAVE NO EPILEPSY AND NO HEADACHES WHAT SO EVER… I ALSO GO TO GYM ATLEAST 3 TIMES A WEEK AND HAVE NEVER HAD A PROBLEM SO NOW MY MOM IS A HEALTH FREAK SHE WANTS TO KNOW THAT I DO NOT DO ANYTHING STUPID SO NOW IT WILL BE MY FIRST TIME GOING TO AN AMUSEMENT PARK AND I JUST WANT TO KNOW THAT IS IT SAFE AND OK FOR ME TO GO OR WILL I ENCOUNTER PROBLEMS MAYBE WITH ALL THE G-FORCE OF THE RIDES AND EVERYTHING… AN ANSWER WILL BE VERY MUCH APPRECIATED

    • jordantheheadcase November 24, 2015 at 9:51 am #

      Hi Themba! It sounds as though you’re not too pressure-sensitive as you don’t have any headaches and can go to the gym without a problem so you may well not have too much trouble on rides. However, I would exercise some caution. I would start off on a ‘tame’ ride or two to see how your head copes before attempting the major rides. I think the rides which involve a sudden, steep, sharp drop can cause problems for some people. But if you start off with smaller rides, I think your head will let you know pretty quickly if it’s too much. But most importantly…have a good time there! Jordan x

      • Themba Masilela November 24, 2015 at 11:33 am #

        Thank you very much I will do what you say and take it from there.

      • jordantheheadcase November 24, 2015 at 5:23 pm #

        Have a great time!

  5. Ann June 15, 2016 at 2:59 pm #

    Hi Jorden,
    Haven’t seen any posts from you for quit some time I do hope you are ok,
    you gave me such a lot of incouregment in the way you up belatedly explain things and yet manage to still keep your humor whilst going through some pretty crappy times your self!
    I too have head probes but mine is NPH as my head is a lot older than yours but I can still wholly simpethise with you as I’m very up and down and planning any thing is almost impossible!
    I have a shunt which seems to have its own ideas and so suffer lots of debilitating head pressure pains!
    I just wanted to let you know your not forgotten and if you are unwell I hope you feel better real soon!
    With the very best of wishes from Ann Leigh X

    • jordantheheadcase June 16, 2016 at 1:19 pm #

      Hi Ann Leigh,

      Sorry for the long absence; yes I am fine and I’ve just written a blog post to update on what I’ve been up to. Sorry to hear you seem to be having issues with your shunt. Is it a programmable? And if so, do you think you might need an adjustment done if it’s been a while? Sometimes this is all it takes.

      Best wishes,

      Jordan x

Trackbacks/Pingbacks

  1. Living with hydrocephalus: What’s it really like to have a brain surgery? | jordantheheadcase - July 15, 2013

    […] 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 […]

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