{"id":784,"date":"2013-07-15T11:48:26","date_gmt":"2013-07-15T10:48:26","guid":{"rendered":"http:\/\/jordantheheadcase.wordpress.com\/?p=784"},"modified":"2024-06-01T11:09:05","modified_gmt":"2024-06-01T11:09:05","slug":"living-with-hydrocephalus-whats-it-really-like-to-have-a-brain-surgery","status":"publish","type":"post","link":"https:\/\/jordantheheadcase.com\/index.php\/2013\/07\/15\/living-with-hydrocephalus-whats-it-really-like-to-have-a-brain-surgery\/","title":{"rendered":"What’s it really like to have a brain surgery? – Living with hydrocephalus"},"content":{"rendered":"

If I had a pound for every time somebody has exclaimed; ‘you’ve had brain surgery<\/em>?\u00a0 What was that like?’,\u00a0 I wouldn’t have to work.\u00a0 Well, maybe I’d have to work a bit<\/em> – but I could certainly reduce my hours drastically.\u00a0 Brain surgery has a stigma surrounding it similar to that of cancer; people fear it.\u00a0 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.\u00a0 It’s not surprising really, given the fact that the brain controls your entire body.\u00a0 To have it once is certainly an experience, a story to tell at the pub.\u00a0 To have it nineteen times as in my case is<\/em>, I suppose, a little odd.
\nI 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. \u00a0 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.\u00a0 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. \u00a0 So let’s start with the big one;<\/p>\n

What’s it really like to have a brain surgery?<\/div>\n

Well, I’m not going to lie; it’s not exactly fun<\/em>.\u00a0 Given the choice of that and a champagne picnic in the park, I know what I’d choose.\u00a0 But it also isn’t necessarily all that awful.\u00a0 In fact, in many cases it can be better than you’d hoped.\u00a0 A lot of what makes it bad stems from what takes place in our minds and we can, to a degree, control that.\u00a0 This, I have learned, is the difference between having a horrible experience and an okay one.\u00a0 Yes, brain surgery can<\/em> be okay.<\/p>\n

Pre-surgery<\/strong>
\nThe 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.\u00a0 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.\u00a0 That’s because I was so damn scared.\u00a0\u00a0 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).\u00a0 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.\u00a0 It worked.\u00a0 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.\u00a0 So I did and managed a lovely lunch with my family.\u00a0 Eating is important; keeps your blood sugars steady as well as your blood pressure level and that helps.\u00a0 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.\u00a0 Focusing on the teeny proportion who might be suffer a complication, I found, does not help.\u00a0 At all.
\nThe morning of the surgery itself I was starving; nil by mouth, obviously!\u00a0 This doesn’t help the nerves so again, keeping busy is good.\u00a0 I watched a lot of crap telly that morning.\u00a0 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.\u00a0 Some of the stories are so awful (if they are in fact true) that brain surgery suddenly does<\/em> seem like a champagne picnic in the park.
\nI did have a complete break-down though, mid-morning.\u00a0 Suddenly the fear and nerves got the better of me and I bawled like a two year-old, loudly, snottily and unashamedly.\u00a0 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.\u00a0 It didn’t last long though.\u00a0 Fifteen minutes later and I felt a lot better.\u00a0\u00a0 Cry if you need to and don’t worry what others think; also talk to your surgeon\/anaesthetist about your fears.\u00a0 He\/she will have heard it all before and be very kind and give you a hanky, the way mine did.<\/p>\n

The anaesthetic room
\n<\/strong>Funnily enough, this scared me probably more than the thought of the actual surgery.\u00a0 I dreaded it, not having had an anaesthetic before.\u00a0 I couldn’t see how I could be wide awake one minute and then something would force <\/em> me to go to sleep the next.\u00a0 Fast foward thirteen years and the anaesthetic is my favourite part of any hospital stay.\u00a0 Yes, I’m being serious!\u00a0 I actually look forward to it!\u00a0 In the National Hospital, they have special anaesthetic rooms next to the operating theatres themselves, which I prefer.<\/p>\n

\"The<\/a>
The anaesthetic room at the National Hospital looks exactly like this one. I like ’em.<\/figcaption><\/figure>\n

Operating theatres I find a bit large and scary.\u00a0 They’re okay; but I prefer the little cosy rooms next to them.\u00a0 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.\u00a0 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.\u00a0 It’s a pin-prick, really not that bad.\u00a0 Then the fun starts!\u00a0 First they (sometimes, not always) give me what they call a ‘painkiller’ which will help relax me.\u00a0 This might also be given to you as a ‘pre-med’ on the ward.\u00a0 God, it’s fun.\u00a0 Seriously good stuff.\u00a0 It’s like having just had the BEST<\/em> night at the pub, ev-ah.\u00a0 I have sometimes started singing after they’ve given me this.\u00a0 I kid you not.\u00a0 I sing loudly, too, like I’m hoping they’ll all join in.\u00a0 Sometimes they do; it depends on who’s in there with you.\u00a0 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.\u00a0 None of this is unpleasant, I promise.\u00a0 A bit strange the first time, yes…but not unpleasant.\u00a0 I think it’s fab.\u00a0 The really, really strange thing is ‘waking up’.\u00a0 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.\u00a0 I usually think I’m still in the anaesthetic room and the staff have just changed over.\u00a0 It’s that quick and that seamless.\u00a0 Seriously, you don’t even dream!<\/p>\n

The Recovery Room
\n<\/strong>\u00a0 This is usually where you’ll wake up.\u00a0 After nineteen surgeries, I am yet to wake up anywhere other than here.\u00a0 These rooms are much bigger than anaesthetic rooms but are not as cosy as hospital wards.<\/p>\n

\"It's<\/a>
It’s big, it’s echoey and lots of beeps and alarms go off in here. Meh.<\/figcaption><\/figure>\n

To be honest, waking up is not my favourite bit.\u00a0 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.\u00a0 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.\u00a0 As I said before, every body is different so you may well not experience this.\u00a0 You will<\/em> shiver because the operating theatres are kept very cool indeed and you’ll have been lying in there for hours.\u00a0 The nice thing is having the heated blankets put on you, which they have lots of..very toasty!\u00a0 Your throat will probably be sore from the breathing tube but you should be able to have sips of a drink.\u00a0 At the National, they always let us have a cup of tea (through a straw) and I swear<\/em>, it’s The. Best. Cup. Of. Tea. In. The. World.\u00a0\u00a0 Nothing ever tastes as good!\u00a0 Usually I’m pumped full of morphine for the pain so I can still feel pretty woozy from that alone.\u00a0 As you become more aware as the anaesthetic wears off, you may become aware also of pain and discomfort.\u00a0 Don’t be a warrior; take the drugs! \u00a0 After a few hours in the recovery room, once they’re happy with how you are, they release you for good behaviour.\u00a0 Back to the ward you go.<\/p>\n

The first few days
\n<\/strong>The first day itself you’ll probably feel sleepy but okay.\u00a0 They pump you so full of painkillers during the surgery itself that it’s relatively easy to keep on top of the pain.\u00a0 Back on the ward they’ll check your blood pressure, pulse, heart rate and so on every couple of hours.\u00a0 You can EAT!\u00a0 Hurrah!\u00a0 But don’t be surprised if you feel quite nauseous; lots of morphine can do this.\u00a0 I tend to vomit for hours if I have too much so I try and limit it.\u00a0 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.\u00a0 Again, all this is normal but it can be odd the first time!\u00a0 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.\u00a0 Don’t do what I tend to do and try and go for a walk on your own after five minutes.\u00a0 I blame the morphine again!\u00a0 It can make you feel invincible.\u00a0 I have got into trouble for leaving the ward to go for a walk as soon as I’m back.\u00a0 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!
\nThe next few days you should (hopefully) start to feel bored with being in hospital.\u00a0 I say ‘hopefully’ because this is usually a good indicator that you’re well enough to go home soon.\u00a0 The stitches or staples will probably itch a bit but as long as they’re not oozing or looking infected, that’s fine.\u00a0 Depending on what type of brain surgery you’ve had, you’ll probably feel some strange and not altogether welcome sensations in your head.\u00a0 With a new shunt, I feel very tight and stretched over where the new shunt tubing is.\u00a0 With my first one, I heard ‘gurgling’ in my head which was rather alarming.\u00a0 Turned out it was just the fluid passing through the shunt valve.\u00a0 Now the shunts I have ‘buzz’ when the valve works.\u00a0 Anything that alarms you, tell your surgeon.\u00a0 Chances are, he\/she has heard it all a hundred times before and can reassure you.<\/p>\n

The next few weeks
\n<\/strong>I covered a few points in my post about recovery: click here<\/a> to read it.\u00a0 I think the most important thing post-brain surgery is to remember that you’ve had a whopping great operation.\u00a0 Your brain is going to be swollen and bruised from having someone rummage around inside it.\u00a0\u00a0 The anaesthetic itself is a powerful cocktail of drugs and that’s just for starters.\u00a0 So you’re bound to feel wiped out.\u00a0 Recovery can be hard; everything hurts, the scars itch like mad, you’re left with half a head of hair and resemble Frankenstein.\u00a0 I have added a photo of me looking absolutely rubbish post-op<\/a> to reassure those who feel the same way that you’re not alone.\u00a0 I’ve also added three photos of scars immediately post-op<\/a> – the other one’s here<\/a> – and one taken a couple of weeks later<\/a>.\u00a0\u00a0 Scars like this can look a bit shocking at first.\u00a0 But you should be proud of every scar; they’re proof that you’ve been through a lot and come through the other side.\u00a0 Yay you!
\nAs the weeks go on, you’ll feel stronger but don’t push yourself.\u00a0 It’s very easy to overdo things without realising.\u00a0 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!!\u00a0 You deserve it!\u00a0 Heck, you’ve just had brain surgery!<\/p>\n","protected":false},"excerpt":{"rendered":"

If I had a pound for every time somebody has exclaimed; ‘you’ve had brain surgery?\u00a0 What was that like?’,\u00a0 I wouldn’t have to work.\u00a0 Well, maybe I’d have to work a bit – but I could certainly reduce my hours drastically.\u00a0 Brain surgery has a stigma surrounding it similar to that of cancer; people fear […]<\/p>\n","protected":false},"author":2,"featured_media":958,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[4,6],"tags":[19,22,63,81,82,100,101,113],"class_list":["post-784","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-living-with-hydrocephalus-the-truth-not-the-textbook","category-most-popular-posts","tag-brain","tag-brain-surgery","tag-hydrocephalus","tag-neurosurgeon","tag-neurosurgery","tag-scar","tag-scars","tag-vp-shunt"],"jetpack_featured_media_url":"https:\/\/jordantheheadcase.com\/wp-content\/uploads\/2013\/07\/scars1-1.jpg","jetpack_sharing_enabled":true,"_links":{"self":[{"href":"https:\/\/jordantheheadcase.com\/index.php\/wp-json\/wp\/v2\/posts\/784","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/jordantheheadcase.com\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/jordantheheadcase.com\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/jordantheheadcase.com\/index.php\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/jordantheheadcase.com\/index.php\/wp-json\/wp\/v2\/comments?post=784"}],"version-history":[{"count":1,"href":"https:\/\/jordantheheadcase.com\/index.php\/wp-json\/wp\/v2\/posts\/784\/revisions"}],"predecessor-version":[{"id":2312,"href":"https:\/\/jordantheheadcase.com\/index.php\/wp-json\/wp\/v2\/posts\/784\/revisions\/2312"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/jordantheheadcase.com\/index.php\/wp-json\/wp\/v2\/media\/958"}],"wp:attachment":[{"href":"https:\/\/jordantheheadcase.com\/index.php\/wp-json\/wp\/v2\/media?parent=784"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/jordantheheadcase.com\/index.php\/wp-json\/wp\/v2\/categories?post=784"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/jordantheheadcase.com\/index.php\/wp-json\/wp\/v2\/tags?post=784"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}