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!

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  • Reply meticulousmick July 15, 2013 at 12:49 pm

    Your sharing for the benefit of others is to be admired. I know what you mean about the taboo subjects. I was playing a clip on depression with this guy talking honestly and my wife came down stared looking wide eyed as if I had lost the plot and was running around the garden naked. Thank you. MM ?

  • Reply streetgirla July 15, 2013 at 1:59 pm

    Thank you for being so honest about this! As you may or may not know from reading some of my posts my best friend has hydrocephalus. So I know a substantial amount about it, but I’m always trying to find more information about it , and what better information is than true life exsperances, because of I find it easy to relate to people with hydrocephalus, and I love seporting them!!! 🙂

    • Reply jordantheheadcase July 21, 2013 at 6:56 pm

      Thanks…support is very important, I find! It makes what could be an unbearable situation very bearable indeed. I certainly appreciate yours. 🙂 xx

  • Reply Mr Tom December 26, 2013 at 6:37 am

    Thanks for awareing us of Hydrocephalus.

  • Reply Deborah dougall December 9, 2014 at 1:00 am

    I have read your blog with interest – my son is 12 and 50+ brain surgeries down the line, it is great to hear from an adult how things feel as he often has difficulty describing what he is feeling. Thank you

    • Reply jordantheheadcase December 18, 2014 at 10:39 pm

      Hi Deborah,

      50+ surgeries?! At 12? Wow, he’s a warrior! How worrying for you both; I really hope he’s having a respite now. I’m glad you’re finding the blog to be of interest…the whole point of it was to let others know they’re not alone as it’s not exactly something lots of people you know are going to have. One day at a time! Jordan x

  • Reply Kelsey November 28, 2015 at 7:58 am

    Thank you for this post. I’m having brain surgery in less than a week to remove a cavernous malformation that is, unfortunately, on my thalamus, in the middle of my brain. My malformation has also caused hydrocephalus so I’m familiar with your condition; although with some anti-inflammatory steroids, the fluid eventually drained. I’m 28 and never had any medical issues before being diagnosed with the cav mal in July so I’m rather nervous about the whole brain surgery thing! Your post has helped me understand what to expect, which helps. I have a feeling I will also be the type to want to rush back to work, but I will try to remember to take things slowly. Wish me luck!

    • Reply jordantheheadcase November 28, 2015 at 11:20 am

      Hi Kelsey,
      It’s a huge deal to have any type of surgery, especially if it’s your first and especially if you’re starting off with a brain surgery! That’s what happened to me too so I appreciate how nervous you must be. I was very nervous before mine. Remember that you are in expert hands, this will do you good in the long run and hey, at least you get to sleep through the whole thing! Definitely take your time afterwards, especially when you get home. When you return to ‘normal’ surroundings it’s easy to think you must be back to normal too, but recovery from such a huge surgery will take a lot of time so be a patient patient! Good luck with it; I hope it goes well. Take all the painkillers they offer you and rest, rest, rest. Jordan x

  • Reply Shannon March 6, 2016 at 2:53 am

    I had a chirari decompression almost six weeks ago. Everything you describe is pretty spot on. I was just wondering if you have ever experienced having bouts of diarrhea after surgery. I am not on any medications anymore and the bouts seem to coinside with day where I have been a bit more active. I was just wondering if these bouts could be my body signaling that I am over doing? Course it could be any number of things but if you ever had this problem it might reaffirm my feeling that it is over doing things.
    Thank you for your blog. I admire your strength and up beat attitude. I’ve only had the one and it was pretty horrible with cf leaks (external and internal ), drains and pain so I don’t know if I could be so positive if I had to face it ever again. God bless you!
    -Shannon Wyoming, USA

    • Reply jordantheheadcase March 6, 2016 at 11:24 am

      Hi Shannon,

      Thanks for your comments and I really hope you’re doing well….six weeks is still early days! Regarding diarrhea, yes that can happen and usually if I get it it’s due to medications. Quite a few of the meds I take whilst having surgery give me bad constipation. Add to that the fact you’re laid up a lot and hardly moving and it gets even worse! Codeine in particular really bungs up my system. So I do find that once I’m back home, moving about, eating fresh food again (let’s face it – hospital food isn’t the best for recovery!) and coming off of the medications, my digestive system throws a bit of a wobbly due to the changes. It’s probably just been overloaded whilst you were in hospital. I bet you’ll find it settles down in a couple of weeks. If it doesn’t, however, go see your doctor.
      Fun, isn’t it?! I’ve known a couple of people who’ve had one brain surgery and found it really, really hard – and I still think my first one was the hardest – but when you have to have them over and over again, well you just have to get on with it! Obviously I’d rather NOT have any more. But hydrocephalus doesn’t work that way and to my mind, I’m still here so for that I am very thankful. But yes, generally brain surgery sucks!! Lol! Keep getting better and as I said, if things don’t improve soon with your digestive system, go to your doctor. Jordan x

  • Reply Janice Monteiro-Lewis June 18, 2018 at 5:20 pm

    I understand it’s been some years since this blog was up but it has certainly helped me understand. My hubby had a shunt inserted some 6 days ago and was alert and could walk 2 days after surgery. He turned 58 in March. Then he became weak and been sleeping mostly since then. This is after a craniotomy done about 5 weeks prior. He was recovering well enough and then the fluid accumulated, hence the necessity of the shunt. I am hopeful, and now even more so after reading your posts.

    After discharge on 14 June, I had to admit him to a nursing facility after 2 days as he wasn’t mobile. He’s conscious and aware but very sleepy so best to let him rest as much as possible. However, they are moving him out of bed and to sit, as was done in hospital. Close monitoring for BP, sugar & temperature every 4 hours as he’s also boderline diabetic.

    Help has come our way in the form of relatives, office staff, friends and even newly made friends – even if it’s a call or message to show their support and concerns.
    God bless and thank you for sharing your experiences. These are what keeps people motivated and uplifted. I ask God to give us good health to enjoy quality life for many more years to come.

    I know that he will still need to be closely monitored after he recovers & life has now taken a new twist.

    Sending you positive, healing light, love & kindness.

    Janice Monteiro-Lewis (Kuala Lumpur, Malaysia)

    • Reply jordantheheadcase August 21, 2018 at 2:00 pm

      Hi Janice,
      Sorry for the late reply. How is he doing now? It sounds as though he’s been through an awful lot and you must be very tired yourself! As you posted this two months ago I’m hoping he’s further along into the recovery process now and you’re seeing some improvement. Sending you best wishes, Jordan x

  • Reply Kasie Warrington March 21, 2019 at 1:23 am

    I stumbled upon your blog while looking up stuff on Hydrocephalus. Reading your blog makes me feel a hundred times better. Especially the anesthesia section! 🙂 I was diagnosed with hydrocephalus late February of this year and I am 32. Apparently I was born with this condition but my body has been compensating for it my entire life until now. 3 weeks out post shunt surgery and I am getting stir crazy at home. I want to return to work next week but I think I need more rest. It’s crazy because I have always been healthy but this is genetic and I guess it was time to show. I look at the bright side and think, better that it was found now as opposed to when they found it in my paternal grandmother at 80-some years old. She was too old for shunt surgery because the doctors told my Dad that she’d have a stroke. Thank you for sharing your story. Your positive take on it makes me feel better if and whenever I have another surgery in the future. Sounds like your medical team cares too. That’s how I felt about mine. The neurosurgeon and her team rocked!

    • Reply admin May 7, 2019 at 12:10 pm

      Hi Kasie,

      Great to hear from you and I’m glad you’re doing well. Wow, I’ve never heard of hydrocephalus being genetic before! That’s a new one for me. But it’s good that they’ve managed to treat you early. The cause of mine was never discovered although my surgeon suspects that, like you, I was born with it and my brain just compensated until it couldn’t cope any more on its own. There are certainly tell-tale signs looking back on my life that it was going on (we wouldn’t have guessed at the time though). Where were you treated? Are you in the UK? I’m glad you’ve found a good team; absolutely crucial in my book! Keep progressing! Jordan x

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