{"id":1118,"date":"2014-05-30T07:58:26","date_gmt":"2014-05-30T06:58:26","guid":{"rendered":"http:\/\/jordantheheadcase.wordpress.com\/?p=1118"},"modified":"2024-06-01T10:57:48","modified_gmt":"2024-06-01T10:57:48","slug":"whats-it-really-like-to-have-icp-monitoring-and-and-theres-a-video","status":"publish","type":"post","link":"https:\/\/jordantheheadcase.com\/index.php\/2014\/05\/30\/whats-it-really-like-to-have-icp-monitoring-and-and-theres-a-video\/","title":{"rendered":"What’s it really like to have ICP monitoring? (And…AND!! There’s a video!!)"},"content":{"rendered":"
ICP probes and all that jazz<\/div>\n

ICP monitoring is a term you may have heard of if you have hydrocephalus.\u00a0 You may have had it before; this post is really aimed at those who are due to have their first, to give them a real idea of what it’s like.\u00a0 I am a firm believer in the ‘knowledge is power’ school of thought.\u00a0 I have had about ten or eleven episodes of ICP monitoring so am pretty old-hat at them by now but even so, my latest experience involved some new experiences so I thought it wouldn’t hurt to write a ‘what you can expect’ guide for first-timers.\u00a0 Doctors and surgeons do have a tendency to be a little blase about such procedures.\u00a0 They’ll tell you about what they’ll physically do and it all sounds very straight-forward.\u00a0 But of course they’ve never actually had a bolt screwed into their skulls with a probe sticking into their brains before so in terms of what it actually feels<\/em> like (which is the bit we patients are concerned with), the experts are the patients, not the healthcare professionals. Looking back, I wish I’d had more first-hand information from a patient who had had it before, especially the removal part as this is done with you wide awake.\u00a0 I have a lot of patients-to-be on this blog asking me if I’ve had it and what it feels like which is why I decided to make a little video and actually film my bolt being removed – the link is further down.\u00a0 ICP stands for intracranial pressure, the pressure that is exerted by the CSF (cerebrospinal fluid) inside the ventricles of your brain.<\/p>\n

\"Me<\/a>
Me ‘n’ My Bolt<\/figcaption><\/figure>\n

When this pressure is within normal limits, you generally feel fine.\u00a0 If it’s too high or too low, you generally feel pretty crap.\u00a0 The ‘normal’ limits (as read on an ICP monitor) are between -10 and +15.\u00a0 Of course this will depend on the individual; I cannot handle pressures over +10 and below -12.\u00a0 If I had a pressure reading of +15, I’d probably have double vision yet I’ve been on the ward many times with fellow ‘bolted’ patients opposite me recording pressures of +25 and not really batting an eyelid!\u00a0 Generally surgeons will get concerned if the pressure heads towards +20 and will intervene at this stage.\u00a0 ICP monitoring is a really good diagnostic tool; it reads the pressure every minute of every day and records what’s happening when you’re awake, asleep, eating, standing, sneezing or just reading a book.\u00a0 At my hospital, the National in Queen Square, they hook you up to a laptop as well which draws out an impressive little graph which shows any spikes or dips in pressure at a glance.\u00a0 You may have ICP monitoring if you’re feeling generally off and adjustments to your shunt settings haven’t helped, or if your surgeons are suspecting a shunt malfunction of some sort.\u00a0 I was going to include some photos of the bolt and probe itself but having looked at the pictures I think I’ll leave it as they don’t look like the friendliest of items, to be honest!!\u00a0 Basically the unit consists of a long-ish probe and a bolt which is screwed into the skull; the probe slides through this bolt and is screwed into place with the nut.\u00a0 Literally a nut and bolt in your head.\u00a0 The procedure to insert it is generally done under sedation although sometimes it’s done under a local anaesthetic.\u00a0 It takes only a few minutes apparently.\u00a0 I say ‘apparently’ because I’ve never had it done under a local; it’s a personal preference.\u00a0 I know many who’ve had it placed with just a local anaesthetic and who don’t mind it at all.\u00a0 I can handle most things but the thought of someone drilling into my skull whilst I’m awake – nah.\u00a0 The hospital you’re at will probably offer you the choice so it’s up to you!<\/p>\n

So, my friend the ICP bolt.\u00a0 Once it’s in, you’re quite literally plugged into the monitor itself, which looks like this:<\/p>\n

\"An<\/a>
An ICP monitor….during one of the rare times my pressures were reading as normal.<\/figcaption><\/figure>\n

they usually set the monitor at your bedside and once you’re hooked up, they can read the pressures all day and all night as well when you’re asleep.\u00a0 You can ‘unplug’ yourself and go to the loo, go for a quick walk and so on if you feel up to it.\u00a0 Once the bolt is in, it does hurt a bit; it’s quite sting-y where it’s been screwed into place and if you raise your eyebrows up it stings even more.\u00a0 The solution is to not raise your eyebrows up or frown.\u00a0 Basically, get botox.\u00a0 You can’t feel the probe inside your head but you will feel it move if you forget you’re plugged in and get up to go for a walk without unplugging yourself first.\u00a0 Nothing bad happens; you just get yanked back to the bed but it does feel a bit odd for a minute!
\nIt takes a day or so to get used to having wire hanging out of your head.\u00a0 At nighttime in particular, it’s best to clip the wire out of the way onto your pillow, otherwise as you toss and turn during sleep, you may find yourself inadvertently tugging on it and will get woken up repeatedly with a sore head.\u00a0 I find it best to use those tiny little hair clips<\/p>\n

\"Clipped<\/a>
Clipped and ready for snoozeville!<\/figcaption><\/figure>\n

(get them from Claire’s Accessories or similar) and clip the wire to the top of my pillow, making sure I’ve left enough room for me to roll in the opposite direction without pulling.\u00a0 Once that’s done, you can get a good nights sleep in.\u00a0 Just don’t forget to unclip yourself in the morning!
\nDepending on how long your surgeon is planning to leave the bolt in will probably depend on whether you attempt to wash your hair or not; if it’s only a few days, you can easily leave it.\u00a0 But for ‘monitor marathons’ like the four weeks I had it in for, you’ll probably want to at least try to wash your hair at some point!\u00a0 This is possible but you just have to be very, very careful; getting the bolt wet is not an option.\u00a0 It takes a bit of practice, but it’s do-able;\u00a0 I have found over the years that the easiest method is to gather the wire in your mouth to keep it well out of the way, make sure you can see yourself in a bathroom mirror (so you can see as well as feel where you’re directing the shower spray) and if you can’t see your reflection, get a friend\/family member\/nurse to carefully place some towelling around (not on!) the bolt to keep it dry.\u00a0 Then, when you wash your hair, you simply wash up to the towel.\u00a0 As long as you keep the bolt and surrounding area dry, it’s okay.<\/p>\n

\"Keep<\/a>
Keep the wire out of the way and avoid the bolt…then just wash ‘n’ go!<\/figcaption><\/figure>\n

\u00a0 Some hospitals are stricter than others about this but to be honest I’ve never known any hospital keep ICP bolts in heads for as long as they do at the National, so the staff there are pretty understanding about it! Besides, I think it actually helps to keep the surrounding hair clean and not let it get very dirty over weeks, to help reduce infection.\u00a0 I have no idea if that’s actually true but it makes sense to me!<\/p>\n

Adieu, Lil’ Bolt, Adieu<\/div>\n

Having the bolt removed is often the part that most people are apprehensive about as that’s the bit you will<\/em> be awake for.\u00a0 It only takes about five minutes to do so you can understand why they don’t bother going through the whole ceremony of an anaesthetic and besides, apart from the stitching-up bit, (which does<\/em> hurt), it’s really not too much of a bother.\u00a0 I won’t lie; it feels weird<\/em>.\u00a0 After spending all your time when it was in trying not to knock it or bang it or get the wire caught, it does feel very wrong to have someone suddenly grappling and tugging at it.\u00a0 I filmed the removal of my last bolt in October; the link is right here – don’t worry, it’s not gory – <\/strong><\/a> but in case you don’t want to watch it, I’ll describe what happens as best I can.\u00a0 First they get you to lie flat.\u00a0 This wasn’t always the case at the National so it may vary from place to place but nowadays, you lie flat.\u00a0 A nurse or medic will start off by unwinding the plaster or dressing which surrounds the bolt itself, usually soaked in iodine to keep everything clean.\u00a0 Then they’ll unscrew the nut on the bolt to loosen the probe itself.\u00a0 This can feel a bit strange, but noting too odd yet.\u00a0 When they actually pull the probe out, sometimes they’ll ask you to breathe out sharply after three, and remove it on ‘three’…this time they didn’t ask me to do that and all I felt was a slight sting and a strange but very fleeting feeling in my head…then it was out, in a second.\u00a0 After that (and you’ll see this in the video) it can feel like it’s all over – I keep asking ‘is that it?’, rather hopefully!\u00a0 But no, they then have to get the screw out of your skull.\u00a0 This is the bit that does<\/em> feel odd; the screw is obviously screwed in tightly on insertion so it can be a bit of a job for them to undo it.\u00a0 My advice is just breathe slowly!\u00a0 When they take it out it stings again but nothing terrible.\u00a0 After that they’ll clean the area with iodine; it’ll feel sore but it’s quite a relief to know it’s all out and done with!\u00a0 The final thing for them to do is stitch you up; you may not actually need this but I lost some CSF when they took the bolt out so I needed quite a deep and tight stitch.\u00a0 Now, the truth is this bit does hurt.\u00a0 A lot, if I’m completely honest.\u00a0 I’ve not met anyone who’s had this bit done and who hasn’t <\/em>thought it to be pretty darn painful.\u00a0 You can actually get a local anaesthetic put in first before they stitch you up if you want, but having had that once, I’d say it’s not really worth it because it takes about three injections to properly numb the area and that really stings in itself!\u00a0 Best to just grit your teeth, get something to grab hold of and get on with it!\u00a0 In the video, you’ll see my big fat fail in just breathing calmly through the stitching bit!\u00a0 It really, really hurt because they had to pull it so tight to stop the CSF leak…it definitely hurt more than any other one I’ve ever had if that’s any consolation!\u00a0 I think it’s because it had been in so long; the longer it’s in, the sorer it gets.\u00a0 But after I’d had a good slug of Oramorph, it died down after about an hour.\u00a0 And that’s it!<\/p>\n

\"Yay!<\/a>
Yay! It’s gone!<\/figcaption><\/figure>\n

\u00a0 Bolt is gone, you’ll have a nice stitch in your head and you won’t be tethered to a machine anymore!\u00a0 Freedom!\u00a0 You may be asked to lie flat for a couple of hours afterwards and then you can get up and go home.\u00a0 Very occasionally your head may object to all the probing, tugging and stitching and stage a full-on protest afterwards.\u00a0 Mine did this this time around but it’s never done it before and I know from the experiences of others that it is very rare.\u00a0 I developed terrible pressure, headaches, distorted vision and nausea for about thirty-six hours afterwards.\u00a0 But all that happened was that I was kept in, monitored closely (a CT scan was done but came up fine), given as many painkillers and anti-sickness as I needed and was only allowed home when I felt well again.\u00a0 It was a real surprise that this happened because I did feel very awful indeed, but it was<\/em> a first.\u00a0 It very, very, very likely won’t happen to you; I am notoriously pressure-sensitive.\u00a0 But I have always said I’ll be truthful in this blog so I wasn’t going to lie about what happened this time around.\u00a0 Generally though, ICP monitoring is a little tedious (being tethered to machines is unusual) but is really, really helpful to your surgeon to determine exactly what your head and your shunt are doing so it really is worth having it done if it’s needed.\u00a0 The discomfort passes and you will hopefully feel loads better afterwards.\u00a0 Plus it makes for some very interesting photos to send to your friends\/family\/boss to impress them!<\/p>\n

At the end of the day, although it’s not something I’d opt for voluntarily (given a choice between a days shopping and ICP monitoring, I know what I’d plump for), ICP monitors can really help get to the bottom of not-too-obvious shunt issues and this helps you get better more quickly.\u00a0 And best of all, they’re pretty darn safe.\u00a0 And when it comes to our brains and our health, that’s what we want!<\/p>\n","protected":false},"excerpt":{"rendered":"

ICP probes and all that jazz ICP monitoring is a term you may have heard of if you have hydrocephalus.\u00a0 You may have had it before; this post is really aimed at those who are due to have their first, to give them a real idea of what it’s like.\u00a0 I am a firm believer […]<\/p>\n","protected":false},"author":2,"featured_media":1114,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[4,6],"tags":[19,22,56,63,65,82,108,110],"class_list":["post-1118","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-health","tag-hydrocephalus","tag-icp-monitoring","tag-neurosurgery","tag-surgery","tag-video"],"jetpack_featured_media_url":"https:\/\/jordantheheadcase.com\/wp-content\/uploads\/2013\/10\/bride-of-frankenstein-1.jpg","jetpack_sharing_enabled":true,"_links":{"self":[{"href":"https:\/\/jordantheheadcase.com\/index.php\/wp-json\/wp\/v2\/posts\/1118","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=1118"}],"version-history":[{"count":1,"href":"https:\/\/jordantheheadcase.com\/index.php\/wp-json\/wp\/v2\/posts\/1118\/revisions"}],"predecessor-version":[{"id":2297,"href":"https:\/\/jordantheheadcase.com\/index.php\/wp-json\/wp\/v2\/posts\/1118\/revisions\/2297"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/jordantheheadcase.com\/index.php\/wp-json\/wp\/v2\/media\/1114"}],"wp:attachment":[{"href":"https:\/\/jordantheheadcase.com\/index.php\/wp-json\/wp\/v2\/media?parent=1118"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/jordantheheadcase.com\/index.php\/wp-json\/wp\/v2\/categories?post=1118"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/jordantheheadcase.com\/index.php\/wp-json\/wp\/v2\/tags?post=1118"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}