What’s it really like to have ICP monitoring? (And…AND!! There’s a video!!)

30 May
ICP probes and all that jazz

ICP monitoring is a term you may have heard of if you have hydrocephalus.  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.  I am a firm believer in the ‘knowledge is power’ school of thought.  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.  Doctors and surgeons do have a tendency to be a little blase about such procedures.  They’ll tell you about what they’ll physically do and it all sounds very straight-forward.  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 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.  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.  ICP stands for intracranial pressure, the pressure that is exerted by the CSF (cerebrospinal fluid) inside the ventricles of your brain.

Me 'n' My Bolt

Me ‘n’ My Bolt

When this pressure is within normal limits, you generally feel fine.  If it’s too high or too low, you generally feel pretty crap.  The ‘normal’ limits (as read on an ICP monitor) are between -10 and +15.  Of course this will depend on the individual; I cannot handle pressures over +10 and below -12.  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!  Generally surgeons will get concerned if the pressure heads towards +20 and will intervene at this stage.  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.  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.  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.  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!!  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.  Literally a nut and bolt in your head.  The procedure to insert it is generally done under sedation although sometimes it’s done under a local anaesthetic.  It takes only a few minutes apparently.  I say ‘apparently’ because I’ve never had it done under a local; it’s a personal preference.  I know many who’ve had it placed with just a local anaesthetic and who don’t mind it at all.  I can handle most things but the thought of someone drilling into my skull whilst I’m awake – nah.  The hospital you’re at will probably offer you the choice so it’s up to you!

So, my friend the ICP bolt.  Once it’s in, you’re quite literally plugged into the monitor itself, which looks like this:

An ICP monitor....during one of the rare times my pressures were reading as normal.

An ICP monitor….during one of the rare times my pressures were reading as normal.

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.  You can ‘unplug’ yourself and go to the loo, go for a quick walk and so on if you feel up to it.  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.  The solution is to not raise your eyebrows up or frown.  Basically, get botox.  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.  Nothing bad happens; you just get yanked back to the bed but it does feel a bit odd for a minute!
It takes a day or so to get used to having wire hanging out of your head.  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.  I find it best to use those tiny little hair clips

Clipped and ready for snoozeville!

Clipped and ready for snoozeville!

(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.  Once that’s done, you can get a good nights sleep in.  Just don’t forget to unclip yourself in the morning!
Depending 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.  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!  This is possible but you just have to be very, very careful; getting the bolt wet is not an option.  It takes a bit of practice, but it’s do-able;  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.  Then, when you wash your hair, you simply wash up to the towel.  As long as you keep the bolt and surrounding area dry, it’s okay.

Keep the wire out of the way and avoid the bolt...then just wash 'n' go!

Keep the wire out of the way and avoid the bolt…then just wash ‘n’ go!

  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.  I have no idea if that’s actually true but it makes sense to me!

Adieu, Lil’ Bolt, Adieu

Having the bolt removed is often the part that most people are apprehensive about as that’s the bit you will be awake for.  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 hurt), it’s really not too much of a bother.  I won’t lie; it feels weird.  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.  I filmed the removal of my last bolt in October; the link is right here – don’t worry, it’s not gory – but in case you don’t want to watch it, I’ll describe what happens as best I can.  First they get you to lie flat.  This wasn’t always the case at the National so it may vary from place to place but nowadays, you lie flat.  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.  Then they’ll unscrew the nut on the bolt to loosen the probe itself.  This can feel a bit strange, but noting too odd yet.  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.  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!  But no, they then have to get the screw out of your skull.  This is the bit that does 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.  My advice is just breathe slowly!  When they take it out it stings again but nothing terrible.  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!  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.  Now, the truth is this bit does hurt.  A lot, if I’m completely honest.  I’ve not met anyone who’s had this bit done and who hasn’t thought it to be pretty darn painful.  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!  Best to just grit your teeth, get something to grab hold of and get on with it!  In the video, you’ll see my big fat fail in just breathing calmly through the stitching bit!  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!  I think it’s because it had been in so long; the longer it’s in, the sorer it gets.  But after I’d had a good slug of Oramorph, it died down after about an hour.  And that’s it!

Yay!  It's gone!

Yay! It’s gone!

  Bolt is gone, you’ll have a nice stitch in your head and you won’t be tethered to a machine anymore!  Freedom!  You may be asked to lie flat for a couple of hours afterwards and then you can get up and go home.  Very occasionally your head may object to all the probing, tugging and stitching and stage a full-on protest afterwards.  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.  I developed terrible pressure, headaches, distorted vision and nausea for about thirty-six hours afterwards.  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.  It was a real surprise that this happened because I did feel very awful indeed, but it was a first.  It very, very, very likely won’t happen to you; I am notoriously pressure-sensitive.  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.  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.  The discomfort passes and you will hopefully feel loads better afterwards.  Plus it makes for some very interesting photos to send to your friends/family/boss to impress them!

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.  And best of all, they’re pretty darn safe.  And when it comes to our brains and our health, that’s what we want!

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43 Responses to “What’s it really like to have ICP monitoring? (And…AND!! There’s a video!!)”

  1. Maggie May 30, 2014 at 9:10 am #

    Having had ICP monitoring once before, I’d say this is a pretty fair assessment of the procedure and experience. I had mine put in without anethesia, just a local anesthetic and some fentanyl for pain control. I was actually laughing and joking with the guy drilling in my skull and the nurse all while watching HGTV! They did it right in my hospital room and let my mom stay and watch (Dad couldn’t stomach it…to be fair, there was a fair bit of blood). But I’m also weird and totally facinated by all this, so it didn’t bother me any. The weirdest part was being able to here and feel the grinding of the hand drill as they put the hole and then the bolt in my skull. Unfortunately, my high pressure registers as normal on ICP monitoring (though when I got a lumbar puncture a year later, the IR who did the procedure said though my opening pressure only registered at 20 cm H2O–14.7 mm Hg, the fluid came out looking like high pressure). Had they known that back in Jan 2013 when I had my ICP bolt, maybe I would’ve been shunted sooner than a week ago (May 22, 2014).

  2. Trudi Bee June 19, 2014 at 11:21 am #

    I think the probe only goes into brain tissue and not all the way into the ventricles. I find myself worrying all the time which bit of memory or skill it is hitting in it’s path! I found my hair became self-cleaning after two weeks and actually looked quite OK!I also super hate the stitch bit.

    • jordantheheadcase June 19, 2014 at 11:50 am #

      Blimey, I wish my hair became self-cleaning after a fortnight! Mine just starts to stick out at right-angles and becomes very angular, hehe! You’re right about the probe; it doesn’t go into the ventricle, it’s the top part of the brain tissue; my mistake! Hopefully in time we’ll all have the new shunt valves which give the pressure readings externally so we’ll never have to undergo ICP bolts again.

  3. neil July 17, 2014 at 1:31 pm #

    i have only had my VP Shunt for about 6 weeks now and I wondered what that scar was https://jordantheheadcase.wordpress.com/2014/05/30/whats-it-really-like-to-have-icp-monitoring-and-and-theres-a-video/#comment-form-load-service:WordPress.comon my forehead, thanks.

    • jordantheheadcase July 17, 2014 at 4:22 pm #

      Interesting! I would have thought you would have known if you’d had monitoring done though, unless you were very ill and kept sedated? Hope things are better now! Jordan

      • Neil July 21, 2014 at 8:00 pm #

        I was in a coma for 11 days and remember nothing, all I have found out about is asking people like you

  4. Cathy Hau April 13, 2015 at 9:03 pm #

    Thank you for this brilliant blog. I am due to go into the National in the next few weeks to have ICP monitoring. I am being seen by Mr Watkins and feel really confident about being under his care after reading all the comments on this blog. I am 53 but have only been diagnosed with hydrocephaly since March 2013 when I had an emergency ETV. Unfortunately this failed and then on New Year’s Eve I had a shunt put in. But, it seems that this isn’t working either as the pressure is still unbearable and headaches not easily manageable. Hence the ICP to see if they can get any clues about what is going on and what could help. Your description sounds pretty horrendous but at least I know what to expect. Keep up the good work with the blog. I am sure it is helping loads of people like me feel less confused about this horrible condition. Thank you

    • jordantheheadcase April 13, 2015 at 10:55 pm #

      Hi Cathy, aarrrggh, sorry if I scared you! It’s a hard one because the whole point of the blog is to be honest about hydrocephalus. Not to sugar-coat it or exaggerate it. But I do realise that it will sound a bit horrid sometimes. I’ve had them 10 times now and you do kind of get used to them. They’re uncomfortable (isn’t every procedure to do with hydro?) but they will get you the answers you need. Plus Mr W. is brilliant. He rocks. You can tell him that from me. 🙂 . You’ll be in very capable hands with him. Good luck and I hope this is the start of a new understanding with regards to your specific situation. Jordan x

      • Cathy Hau April 15, 2015 at 3:15 pm #

        Hello Jordan, Thanks for your reply. Don’t worry – my tolerance for pain and being scared has definitely gone up over the last couple of years. It has had to. Your confidence in Mr W is heartening. I will put my faith in him and hope for the best. Good luck to you too. Cathy

  5. Georgia May 2, 2015 at 1:07 pm #

    Hello, I am going in for this at the national on Friday and had no idea what to expect as this is my first ever time even going under, let alone having a bold attached to my head! I found this blog after doing lots of searing on google and want to say THANK YOU so much for sharing your story! I am no longer scared and just can’t wait to get the results for the appropriate treatment. I must admit i’m a little nervous about that stitch but hope to calmly breathe through it as you did. I wish you well and good luck to you. Thanks again, Georgia.

    • jordantheheadcase June 4, 2015 at 9:36 am #

      Hi Georgia! So tomorrow is the big day? Good luck! I’m sure it will all go fine. Say hi to Lewis for me! 🙂 . He’s a great surgeon so you’ll be in the best hands. Jordan x

  6. Georgia May 2, 2015 at 1:09 pm #

    p.s I am seeing Mr Thorne and am being tested for pressure caused by Chiari Malformation and syringomyelia

  7. Kate June 30, 2015 at 3:37 pm #

    Thank you so much for this post! I am currently in the National, where I have been on and off for three years (currently one month into a ‘day case’ admission…) as I have spontaneous intracranial hypotension. Except that since my last procedure to fix my SIH, I’ve high pressure and venous sinus stenosis, causing a daily catastrophic CSF leak in my spine (my tear in my spine is at T1/2). I’ve just been told I’m having the bolt fitted tomorrow by Mr Watkins (who I have never met), so it’s good to know what to expect, and that he is thought of so highly!

    • jordantheheadcase June 30, 2015 at 6:32 pm #

      Hi Kate,
      I have to say that your post made me smile a bit….NOT because you’re having a horrible time…but the ‘one month into a day case admission’ bit! Mr Watkins’ patients do tend to be in for a long time! He’s very thorough (which is a good thing, believe me) but yes the hospital stays as a result can be loooooong! Food’s not too bad though so that’s something! Well I’m glad the post helped; as I said, I’ve had about ten or eleven bolts now (I can never remember exactly which!) and the vast majority have been with Mr Watkins so fear not….he’s an expert with these! He’s a very nice man too and so are all his team. If you have any concerns or questions, you can ask him: he always takes time to answer you and address any fears. Good luck and keep me posted! Jordan

      • Kate July 6, 2015 at 6:18 pm #

        Hi Jordan! I must say, you deserve so much credit for having your bolt in a month! I’m on day 5, and I’ve hit it off so many different things at the hospital that I’m surprised it hasn’t come out! You were right about the procedure though, so thank you! Only have to have the bolt in another few days, am having some stents fitted tomorrow morning! Kate

      • jordantheheadcase July 21, 2015 at 10:39 pm #

        Hey Kate! Are you home yet? What happened with your pressures and how long did you have the bolt in for? Hope you’re feeling better. Jordan

      • Kate July 21, 2015 at 11:01 pm #

        Hey Jordan! Thanks for thinking of me 🙂 I’ve been home a week today (2 weeks since my stent was fitted), and my pressure is considerably better – not hard considering I was averaging between 30-38 beforehand! My bolt was removed after 10 days, fortunately I actually didn’t have to feel most of it as I was only semi-conscious due to heavy pain meds following the stent – I was vaguely aware someone was in the room and that’s about it!! I’m going back in in 8 weeks for another bolt and venogram to check on the the stent, and will probably have to have a second stent fitted then. But my quality of life has already improved so much in 2 weeks I won’t be complaining if it all helps further! Hope you are well, Kate

      • jordantheheadcase July 22, 2015 at 6:39 pm #

        Hi Kate,

        So glad you’re feeling better. Pressures of 30-38 though…wow! What caused that, do you know? Hope you continue to improve. Jordan

      • Kate July 24, 2015 at 10:58 pm #

        They think it was some sort of rebound effect – I’d had low pressure for so many years, that my body now over produces CSF, which combined with everything else going on, shot my pressure up. Although, naturally this was heavily caveated with the phrase ‘we’re not really sure why this happens….’

      • jordantheheadcase July 31, 2015 at 10:31 pm #

        Hi Kate,
        Blimey, that’s amazing…I’ve overdrained for most of my diagnosis as well so I’ll bear that in mind if my pressure ever suddenly rockets in the future! The body is a mysterious thing; my brain compensated from birth to the age of 26 before it decided it had better alert me to the fact that my brain was so swollen with fluid it couldn’t even be scanned properly. Up until then I’d never really had a headache! As long as they’re sorting you out, that’s the main thing. Keep on keeping on! Jordan

  8. Annie Leigh August 26, 2015 at 8:11 am #

    Hi Jordan,
    I was diagnosed with np hydro January of this year after noticing a steady decline in my balance and memory loss, I had my shunt fitted on the 19 of June.
    I’m 60 so I feel more fortunate than most of the people on your blog including you Jordan to have got this far in life before getting this horrible problem!
    I would just like to say thank you for all the very honest Information about your personal journey as it has helped me so much to come to terms with my own probes, and I love the way you are so up beat about it!
    You are a real star!
    Thank you Ann x

    • jordantheheadcase September 3, 2015 at 10:38 am #

      Hi Ann,

      Thank you for your kind words! It’s a funny thing getting diagnosed in adulthood; on one hand you do indeed feel very grateful for having had the opportunity to live shunt-free for most of your life. But on the other hand it is, as you are discovering, a HUGE change to come to terms with, both physically and emotionally. Your entire life gets affected by it and it is pretty much the end of life as you knew it, even if the shunt is working well. So I always feel grateful for having had 26 years of no headaches, but I do allow myself some days where I find it a struggle …because it is! Counting your blessings really helps though. I hope you continue to do well. Jordan x

  9. Lorene September 3, 2015 at 5:15 am #

    was wondering if you could maybe give me some suggestions. I have Chiari Malformation. As a result of this after several years along with all kinds of problems with balance, being sick to my stomach all the time, headaches, a fuzzy feeling in my head, falling down stairs, my memory loss and so much more, I was finally seen by a great Chiari doctor. He ordered several other tests to check the flow of spinal fluid in my head. Each and every test showed fluid being trapped. Then I was sent for a test somewhat like an MRI but they were checking a little better. This test showed that I have arterial stenosis. I was also told that I had damage to my optic nerve in my left eye. After the doctor received the results showing the stenosis I was called and asked if I could come to the hospital sooner than originally planned. My doctor felt that he had to find out how high my pressure was so he would know if I needed stents or a shunt prior to the brain surgery that I need for the Chiari. So 2 weeks ago I was admitted to the hospital for the ICP bolt monitor. It seemed to me that the nurses on the floor were not sure how the hole process worked. I heard the doctor explain that should my pressure go high then an alarm would go off. They were then instructed to check on me and to document what I was doing or how I was feeling when it alarmed. So within the first 5 hours or so the alarm went off several times. My doctor had sent it to go off if my pressure went above 25. After several times the nurse said she was going to turn it up to alarm at 35 because they didnt have time to keep checking on me. However, not once did they ask how I was feeling when the alarm did go off. Again with the alarm set at 35 it had gone off several times, again the nurse turned it up to 45. I was very upset by this as I felt it wouldnt be documented correctly. A little while later I called the nurse and asked to have someone help me sit up just a little bit. Then 2 nurses came in. While helping me the I think battery that was attached to my head slipped off the bed and fell to the floor. This did tug my head down. The nurse commented that they needed to clip it to the bed so that it didnt happen again. They never came back to attach it. Soon after this I started to have a horrible, horrible headache. I also felt fluid going down my back and the back of my head was wet. The nurse checked and said I was in fact sweating. She then gave me to pills for the pain. After an hour or so my headache was getting worse. I called the nurse and asked her to call my doctor. She said she wanted to give me morphine in my IV first to see if that helped. Every time it wore off I woke to a horrible headache with my head, neck and pillow even wetter. Right after the battery fell an intern had come in. I asked that they move the monitor closer so that I could see how the numbers were going. I noticed as soon as the bad headache started the monitor was reading between 0 and -2. At one point I called the nurse to let her no. What she said to me shocked me. She said that 0 was perfect and meant no pressure. I was speechless. The monitor continued with this reading until my doctor came in just shy of 24hrs from the time the bolt was put in. As soon as he saw the monitor reading 0 he asked me what had happened. I explained everything to him. At this point he was very upset and went out to talk to the nurses. He came back in with 4 nurses and asked if the alarm had been going off and they all said no. He then asked who had turned the alarm up, again know one spoke up. When they left the room he checked on the bolt and indicated that it was soaking wet as well as my entire back and pillow. He then told me that somehow the wires had come out and it was in fact spinal fluid that was coming out and causing the very bad headache. He said the bolt had to be removed before I got an infection. He then said that I had to go back into surgery the following day to have a new one put in. Back in my room after the new bolt was put in I noticed that it looked so much different than the first one. So, for a few hours the alarm went off indicating high numbers but then it stopped. The nurses said that the pressure was perfect and that the doctor would be in to see me the next morning. I asked if they were going to let me get up and walk like the doctor instructed me to do. They said that I wasnt allowed to get up. The next day when the doctor came in he asked what I had felt earlier when the numbers were high, he then asked the nurses and they indicated that they werent sure and never asked me. At this point I am so upset and in total shock. He then asked if they had gotten me up to walk. The nurse did tell him no because of the bad headaches I was having. I told him that I know the pressures are high and that I felt is wasnt recording correctly now because of the loss of fluid. After he left the room I called the nurse to let me get up, which she did. She allowed me to walk up and down the hall then back to bed. The doctor came in the next morning and said that I was going to have the bolt removed and discharged. When I asked him if I needed a stent or a shunt he said I think your pressures are perfect. He suggested that I go back to my home state and see my primary doctor. He wanted me to tell my primary that in order to do the chiari surgery he first wanted me to lose weight. He said that he wanted me to have a gastric bypass. I am now so upset and speechless. I am discharged from the hospital and sent home. When I saw my primary this past Friday he was in total shock himself when he heard what had happened. He said there was no way I would have gastric bypass with arterial stenosis. He said he felt that they didnt have the proper pressure reading from when the first one came out. So here I am right back to where I was 2 weeks ago. My head is killing me. The surgeon also told me to start taking my diamox for the pressure again which was 1000 mg. Why, if the pressure was fine. I asked my primary and he agreed. He also felt that instead of 1000 mg I should just take 500. Here is the problem. Early this morning I took the diamox again for the first time since the bolt was removed. I fell asleep for a little while this morning after taking it. However, when I woke up I felt very, very sick. I am not sure what happened but I felt like I was out of my mind. My head was all crazy as well as the horrible nausea. Now I am afraid to take the diamox. Then as the day went on today I could feel the pressure building once again in my head… Now what??? I am so afraid that I am going to die in my sleep and now I have no clue what to do about the pressure. Does any of this make since to you? Do you have any suggestions on what I should do next. I am so sorry for asking you this. I just have no idea what to do… any suggestions would be greatly appreciated. I am so sorry for this very long message, I am just scared to death with no idea what to do. Thank you so very much for any help you may have. Lorene

    • jordantheheadcase September 3, 2015 at 10:35 am #

      Hi Lorene,

      Well you’re not the only one who is speechless! What a terrible ordeal for you. It sounds as though you unfortunately fell into the hands of some of the most incompetent nurses ever. How dare they raise the pressure because they ‘haven’t got time to check’?? Pressures of 25 are high; that’s why the doctor set it to that level. Leaving you to reach pressures of 45 before you’re even asked how you’re feeling is disgusting and downright cruel. You had a massive CSF leak by the sound of it; to bring your pressure from above 45 to 0 must have meant you lost a great deal of fluid and no wonder you felt so bad; that’s a huge swing! A pressure of 0 to -2 is perfect in a normal brain but if it was above 45 only a few days earlier then someting is very obviously wrong. it sounds as though they just can’t be bothered to take the time to sort out what sounds like a rather complex case of pressure build-up. That doesn’t mean that nothing can be done; you just need to get to a different surgeon and pretty soon. Your doctor sounds like he is on your side so if I were you I would ask for a second opinion regarding the pressures. You need to be assessed again…just not by that same team! It is your absolute right to demand a second opinion so do not be afraid to ask, even if it means you may have to travel a bit to get to a different team. I have to travel 70 miles every time I see my surgeon but there’s no way I’d go back to my local one! I asked for a referral after bad treatment at my first hospital and it’s a good thing I did. I don’t have any experience of Diamox but am I correct in thinking that it suppresses CSF production? If so, it could be (again) the very sudden drop in pressure that is making you feel so bad. Low pressure symptoms can totally suck. I’ve had very low pressures many times and they can make you feel just as bad as high pressures do. I would guess that you probably do need a shunt but that you need to reduce your pressures gradually and not in one fell swoop, so that your brain can cope. Everyone is different which is why neurosurgical staff should NEVER diagnose you just from looking at your pressures alone! They should go on how you are feeling. If you’re feeling terrible and the monitor is reading 0, that will indicate that it is too low for your brain to be okay and you need to go up. I feel terrible if I have pressure of +15 – but that is considered normal for everyone else! My surgeon knows however that this is way too high for me as I feel so awful if it goes up to there. The nurses should have worried far more about how you felt than reading a pressure of 0 and thinking that was fine and you can go. In my hospital, the staff sometimes cover up the monitor display so I can’t see it…that way I’m not influenced by what is on the screen and they go solely by how I am feeling and what I am doing…they note that first and THEN look to see what the corresponding pressure was at that time. That’s how we found out that I can’t tolerate anything above 10 very well. It surprised them all but they went with that, lowered my pressures to around 4 and I felt so much better. The perfect pressure is the one which is perfect for YOU, not on a general scale. 0 may be great for some but awful for others. Go back to your doctor and ask for another round of ICP monitoring at a different hospital; any good neurosurgical unit can do it and it doesn’t have to be a team connected to the surgeon who is going to treat your Chiari. Take someone strong-willed with you to fight your corner if you need to! And if he refuses, see a different doctor. You need to get assessed again but by competent staff and that is your right as a patient. Don’t be told ‘no’. Good luck and keep me posted. Jordan x

  10. Amy December 12, 2015 at 8:04 pm #

    I got the icp monitoring fitted in 2 nights ago, coming out tomorrow I hope, was suppose to be today….

    • jordantheheadcase January 26, 2016 at 12:39 pm #

      Hi Amy, sorry for the delay in replying to you. How did it go? Hope you’re feeling okay! Jordan x

  11. Kerrie February 10, 2016 at 1:16 pm #

    Thank you for such an amazing blog. It’s comforting to know that other people are going through similar things and can relate.

    I have been diagnosed with iih for 2 years now and currently on Acetazolomide 1000 and Topiramate 50 daily. I’ve had 4 LP’s, all of which my fluid was between 38-45. On the waiting list to have my ICP monitoring at National in April and extremely nervous. This is to determine if I need a shunt or not. May I ask, when do the surgeons tell me how long I will be staying in hospital for? I only assumed ICP monitoring would only be a day case but I see its for a month? Is this because some of you already have shunts in place?
    They have also specified to me that I will have to stop taking my acetazolomide and Topiramate for a week before the monitoring?! My eyes and head can’t cope if I miss one tablet! I really don’t know how I will manage a week!

    • jordantheheadcase February 10, 2016 at 6:02 pm #

      Hi Kerrie,

      Thanks for your kind words; I’m glad you find the blog useful. That was the whole point of it so I’m glad it’s working! Regarding the ICP monitoring, it’s not necessarily for a month. It depends on your personal situation, who your surgeon is and what happens whilst the bolt is actually in your head. It will almost certainly be in for a few days though..this way they can get a really good idea of what is happening with your pressures when you sleep, when you’re awake, sitting, eating, walking and so on. And you need this information if they’re considering a shunt. I understand your nerves; I was in tears before I had my first-ever bolt, 16 years ago. Now I’ve had so many I just find them time-consuming and inconvenient (although they are very useful things to have!). It is probably a good idea to contact your neurosurgeon’s secretary to ask if he/she has an idea of roughly how long your surgeon is considering. It helps to have some idea, especially if you have a job you need to hold down or pets/children who need to be looked after. They always do ask you to stop meds before the bolt is inserted; they need to see exactly what your brain is doing on its own, without any medical influence. Again, if you really think that’s going to be too hard, contact your surgeon’s secretary and express your concerns. Maybe they can allow you an extra couple of days. Once you’re on the ward you’ll be able to take other painkillers and medication so you shouldn’t suffer too much once it’s in. Good luck with it! You’ll be fine…they’re very good with bolts at the National! Keep me posted on what happens. Jordan x

  12. Lucy August 28, 2016 at 12:20 am #

    Hello,

    I was wondering whether you’d be able to help me or even give me a bit of reassurance! I had my first ICP monitoring at The National four weeks ago (I have Chiari). I was in for two days and was relieved when I left thinking it hadn’t been too bad. Never did I think the worst was yet to come. My head pressure and pain have been unbearable since with me barely being able to sit up and keep my head upright. I feel like my head is truly about to explode from the pressure and it’s never been this bad before. I had expected to feel completely fine following the procedure, mostly because I wasn’t told otherwise and they can make ICP sound like quite a small procedure. I’m starting to worry that I’m going to be permanently stuck like this and I’d really love some reassurance that it may take a couple of months to return to my normal level of pains and head pressure. I’m almost tempted to go into hospital, which is saying something as I avoid a&e at all costs normally! Thanks for any advice or reassurance you can give! X

  13. Lucy August 28, 2016 at 12:30 am #

    Hello! I was wondering whether you’d be able to help me or even give me a bit of reassurance! I had my first ICP monitoring at The National four weeks ago (I have Chiari). I read your blog before hand and it was very useful! I was in for two days and was relieved when I lef, thinking it hadn’t been that bad. Never did I think the worst was yet to come. My head pressure and pain have been unbearable since with me barely being able to sit up and keep my head upright. I feel like my head is truly about to explode from the pressure and it’s never been this bad before. I had expected to feel completely fine following the procedure, mostly because I wasn’t told otherwise and they can make ICP sound like quite a small procedure, which I guess when compared to other brain procedure it is. I’m starting to worry that I’m going to be permanently stuck like this though and I’d really love some reassurance that it may take a couple of months to return to my normal level of pains and head pressure. I’m almost tempted to go into hospital, which is saying something as I avoid a&e at all costs normally! Thanks for any advice or reassurance you can give! X

    • jordantheheadcase August 29, 2016 at 10:31 pm #

      Hi Lucy,

      Will reply to this in the morning first thing as internet playing up tonight. Hang in there and I’ll get back to you tomorrow. Jordan x

    • jordantheheadcase August 30, 2016 at 4:45 pm #

      Hi Lucy,

      I’m so sorry you’re going through this. It is not normal following ICP monitoring and you should contact the surgeon you are under at the National or their secretary as soon as possible. I had a bad event following my last period of monitoring but it was immediately afterwards so I’m not sure if what you are experiencing is your chairi, migraines, your chiari or something else. Don’t ever worry about making a fuss if things feel that bad… so many times my surgeon has told me he’d rather see me than have me ignore things and suffer more for it. Give them a call as soon as you can and do keep me posted. Good luck. Jordan X x

      • Lucy August 30, 2016 at 4:55 pm #

        Hi Jordan,

        Thanks so much for replying. This definitely isn’t my usual head pressure or Chiari symptoms, nor is it one of my migraines. It really feels like when you put too much water into a hot water bottle and you need to let some out because the pressure is too much. That’s how I really feel inside the top of my head, along my hair line in particular (more on the side where the screw was). The results showed my pressure was a bit high but I seriously feel as if something has happened since the bolt was removed as the inside of my head has never felt like this before. I didn’t know whether to try to contact him, partly because it can be difficult to get in touch with his secretary and also because I can’t imagine he’d have anything to suggest as the only way to check the pressure would be to repeat what I feel has caused this! I’m notoriously sensitive and have so many allergic and adverse reactions to things, but I was really hoping it might be okay and settle itself down on its own. I am seeing my Neurosurgeon in December and should be having a repeat mri before then, but maybe I’ll try to contact him this week. Wish I hadn’t have had it done now! 😦 x

      • jordantheheadcase April 9, 2017 at 12:53 pm #

        Hi Lucy,

        How are things going? I haven’t been able to attend to the blog for some time but am hoping now that everything has settled down that I can do it regularly again. What happened…is anything different? Jordan

  14. Sarah Stocking January 24, 2017 at 7:21 pm #

    Thanks for this very informative and honest account. My sister has gone to the national today and will be having this procedure tomorrow. I like to be prepared for any visit to the national, so thank youoagain.

    • jordantheheadcase April 9, 2017 at 1:33 pm #

      Hi Sarah,

      How did it go? Was your sister okay? Sorry this reply is so late; a lot has been going on! I hope everything went okay though. All the best, Jordan

  15. Deb Chatwin February 23, 2017 at 5:51 pm #

    This is great information, thanks so much for posting! My13 year old having ICP monitoring in a couple of weeks and although I will not likely let her read this just yet, it is immensely helpful to me to understand what to expect so I can support her better. Thanks again

    • jordantheheadcase April 9, 2017 at 1:50 pm #

      Hi Deb,

      Thanks for your post…how did your daughter get on? Did her team get the answers they were after? I hope you got through it okay too…I know how stressful it is for parents. All the best, Jordan

  16. Joe Galatha May 11, 2017 at 3:25 am #

    I just found your blog about a month ago, Jordan. I have had Hydrocephalus and a shunt since I was 8 months old in 1968; that means I’m almost 50. I’ve only had three revisions, the last one was almost 28 years ago – – – I’m feeling very guilty having been so fortunate, when I read the blogs and stories of people who have not had my luck avoiding surgeries.

    I’ve never had an ICP; they want to do one now. I kept asking him “how did my previous two neurosurgeons perform four surgeries all without an MRI or an ICP monitor (all I have ever had before now is CT scans, and of course in 1968, it was just plate x-rays)

    So I’m grateful to having found your blog, and your calm, pragmatic demeanor about all of this.

    I kept asking if they’re going to replace my shunt ANYWAY, why I needed the ICP monitor, but I get it now. I’m a little wary of having the new hole in my head, but hey – People accuse me of being as useful as one anyway *rimshot* so

    here we go.

    Thanks for your presence on the internet, it made a difference in my life.

    • jordantheheadcase June 27, 2017 at 2:39 pm #

      Hi Joe,
      Thanks for your message…how are you and how did things go? Did you have an ICP bolt? And please NEVER feel guilty for only having had the odd revision…that’s fantastic news and stories like that are what we all want to hear!! Jordan x

  17. Jessica Behan June 22, 2017 at 2:35 pm #

    Thanks for that helpful info. Please could you tell me what the ‘at home’ recovery period is after its take out? My son is 7 and due to have 1 done for the first time in a month and it worries me that he probably will be conscious for the removal.

    • jordantheheadcase June 27, 2017 at 3:41 pm #

      Hi Jessica,
      It can be very quick to recover from having the bolt removed. Sore for a day or so and then that’s it. I’ve had 11 bolts and all the removals went fine apart from the last one. But even then I was okay a week later. I’m sure he’ll be right as rain very quickly after having it taken out. I really hope it goes well for him. Keep me updated! Best wishes, Jordan x

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