How does it actually feel to have a shunt? – Living with hydrocephalus

7 Aug

At the time of this ‘going to press’ (ie 7th August), my own shunt has decided to play up so tomorrow I am going to hospital in London to see my surgeon.  I am keeping my fingers crossed for no more surgery – but I think I already know what the outcome is going to be!  My apologies for not having updated this blog for so long and for probably not being able to update it for a while after today.  I hope to resume to normal service shortly! 

After having yet another discussion with a fellow shuntee about the odd things we can feel/hear with our shunts, I thought it might help to write about them here, in case newly-shunted people are worried about what they might be experiencing.  I am currently on my third shunt in the thirteen years since my diagnosis and I have had two different types; the Codman Programmable and now a Miethke ProGAV.  Both of them have presented different sensations and sounds once implanted.  Some are quite funny, some are a little unsettling at first but all are easier to deal with once you understand what is causing them.
So what does a shunt look like?
It looks like this:

This is a basic model; the valve part (lumpy part) will probably look different depending on what kind of model you have.  (picture courtesy of neuroanimations.com).

This is a basic model; the valve part (lumpy part) will probably look different depending on what kind of model you have. (picture courtesy of neuroanimations.com).

The ventricular catheter part goes into the brain, where the fluid is, the valve sits under your skin around the rear of your ear (that rhymes!) and the distal catheter is tunnelled down to your peritoneal cavity, in your abdominal area.  It is easy to forget that essentially a shunt is not wanted by the body.  Needed by it, yes; wanted, no.  It is a foreign part and doesn’t sit ‘naturally’ anywhere.  So at times it can feel a bit odd.  The actual procedure to get it in there is quite rough; I’ve seen a couple of shunt surgery videos on YouTube watching them has certainly made me feel grateful for general anaesthetics!  There’s a lot of tunneling, pushing and pulling so you’re going to feel sore afterwards, that’s for sure.  It’s true that some people who have a shunt truly forget that it’s there.  But I am often aware of it and when I’ve put it to my surgeons over the years, it’s been met with varying degrees of scepticism!  Many people don’t feel or hear anything strange at all and that is as normal as noticing the strange stuff.   Everyone is different and the points I’ve listed here have been the most frequently discussed issues on the hydrocephalus forums I’ve been on over the years and the various chats I’ve had with my fellow ward neighbours during my hospital stays.  You honestly probably won’t experience even a couple of them; I’ve just added this list as a ‘just in case’…if you ever start to experience any of these things, you can check back to ensure that you’re not simply going mad.   If you are going mad….well, I can’t help you there!

The Good Stuff
  • You can’t hear or feel a thing! – this is obviously the preferred outcome for many.  My first shunt was a Codman and after the initial recovery period following the op to put it in place, I couldn’t really feel it there at all.  The bottom end went into my heart.  This isn’t done as often these days; surgeons prefer to place the bottom end of the tubing in the peritoneal cavity, by your abdomen.  But whilst it was in my heart, I couldn’t feel it in any way.  Other than the fact my head felt sooooo much better than before the surgery!  See, shunts can be problem-free for many people and the clever little devices keep you alive which, frankly, rocks.
  • You have a good excuse if you don’t like fast fairground rides! – okay, so this one may apply to me only.  I don’t like rollercoasters or any fast rides.  Having nearly passed out on the Teacup Ride at Thorpe Park a couple of years ago (all that spinning!  It looked so safe and tame!), I know now to steer well clear of rollercoasters/big dippers/any scary-ass rides.  I know this may not be ‘good stuff’ if you love them.  Alas, shunted heads can’t make pressure changes as fast as non-shunted heads so you may suffer a bit on a fast ride, so it may be better to avoid them altogether. It’s better to be safe than sorry.  But hey, you can have fun watching your friends scream their heads off on them instead!
  • You get special treatment at airports – as in, you don’t have to go through those doorframe-esque body scanners.  These days, many shunt valves won’t be affected by magnetic scanners at airports or anywhere else they may use them.  But some do.  So flash your ‘shunt alert card’ at the security guards (you can get one from SHINE – they’re very important folks!) and they’ll use a wand instead, whilst avoiding your head.  Okay, so it’s not exactly VIP treatment.  But it makes you feel special when you flash your card.
  • You can impress people! – you can show off your head scars when they’re fresh (men especially for some reason seem to be impressed by them), make the little bit of tubing that goes down your neck (which is usually slightly visible) wiggle when you move your head side-to-side and generally regale people at parties with your tale of brain surgery.  If, like me, you get way too embarrassed to do that, you can just bask in the knowledge that everyone who knows you have a shunt and battle a condition like this will generally admire you for being a brave soul.
The Odd-But-Not-Unpleasant Stuff
  • ‘Buzzing’ in the head from the valve – ah, yes – the buzzing!  I first noticed this with the Miethke ProGAV valve. The Codman valve definitely didn’t do it.  I say it’s a ‘buzz’ – it’s really like a mechanical whirring sound – not unlike that made by the dial on a safe being turned (for those of you who watch many detective programmes on the telly!).  Depending on how close to your ear the valve actually is determines how loud this sound is.  My first ProGAV valve was positioned right behind my left ear and to be honest, the noise became quite annoying!  It was like having an annoying bluebottle next to my ear which wouldn’t go away.  cartoon flyNow that my new shunt is on my right side and slightly further back from my ear, it is pretty quiet in comparison.  I hear it when I tilt my head back, stand up too quickly, or when something is causing the pressure in my head to be too high for the shunt setting, like a blocked nose from a cold or a general shunt malfunction.  Mr Watkins once held a stethoscope over the valve area whilst I tilted my head back to see if he could hear it too…I think he did, if I remember correctly!  Sometimes I’ll wake up around 3am with it buzzing away because when we enter the deep, REM stage of sleep, intracranial pressure can elevate by quite a lot; it’s perfectly normal but of course the shunt senses this as a problem and starts to drain like crazy.  So it’s not uncommon to wake up with a buzzing head and a dizzy feeling in the early hours!  It settles quickly again though.  The only time I’ve not heard the valve working at appropriate times is when it’s been ‘stuck’ or when it’s been tied off surgically.  This really confirms to me that if I can hear it, it means it’s working fine, so it’s a good sound to be hearing!  My surgeon was doubtful at first about all this but there have been quite a few of us now who can hear it so we can’t all be wrong!  I must stress however that if you can’t hear yours, it doesn’t mean that it’s not working!  Don’t panic if yours is quiet.  It may just be a different valve type, too far away from your ear to detect it or simply something that you won’t pick up on.  If for any reason your shunt stops working, you’ll pick up on other things anyway – like a bad and worsening headache!
  • ‘Gurgling’ in the head from the valvepretty much the same as above; my Codman gurgled when fluid was passing through the valve.  Freaked me out the first time.  Intrigued me the second time.  Was pretty run-of-the-mill by the fourth time.
  • Tugging or tightening of the shunt tubing – this is pretty common after the initial surgery to implant the shunt.  After a few days it can feel like everything is getting very tight and stretched.  I am not sure if this is just the healing process or scar tissue forming around it after the surgery, but either way it’s happened every single time and I now view it as quite normal.  Nothing bad has ever come of it.  It’s just uncomfortable for a bit. Sometimes this happens way after the surgery but that’s quite rare.  I always check to see if the area that’s hurting is red, irritated or raised, or if I’ve got a temperature at the same time to ensure that an infection isn’t starting.  The chances of that are slim but it’s always good to be cautious with shunts!   Of course, it’s different if the tubing has actually kinked, got caught under the diaphragm or is lying somewhere it shouldn’t (see the first bullet point in the next category) but believe me, you’ll be aware of that if that’s the case!
  • Weather or not? – surgeons and registrars generally say no.  Patients generally say yes.  The question of whether the weather affects the shunt or how your head feels is often a big debate in the hydrocephalus world!  Because everyone is different, it’s impossible to say a definite yes or no.  However, the amount of fellow patients I have met over the years and the various discussions I’ve read on hydrocephalus online support forums has indicated that yes, weather can certainly affect how your head feels.  Take this heatwave we’re having; I have been fine up until…..thunderstorm day!  I know my head is way, way more pressure-sensitive than many fellow shuntees I have met, so I’m not surprised that I’ve been floored for two days during this humid, moisture-filled-atmosphere couple of days.  Today I feel very slightly better but I know it’s going to be another day or two at least before I get back to my ‘normal’.  Many of my friends on the hydro forum I belong to online have been suffering as well, for the same reasons.  Some are worse when it rains.  Some suffer when it’s hot.  Some heads can’t handle the cold.  One woman I know who has a shunt has a terrible time during a full moon.  Not everyone suffers with weather, but some do, so if it happens to you, don’t fret or panic; it’ll pass!  Just keep an eye on the weather forecasts, identify what weather systems are your triggers and take it easy on those days.
The Not-So-Pleasant-But-Doesn’t-Happen-To-Many-People-So-Don’t-Worry-Too-Much Stuff
  • Stabbing pains from tubing getting caught up in your abdomen – nope, it doesn’t happen a lot to people.  But it happened to me for a couple of years and so I thought I’d mention it, just in case you’re experiencing it and think it’s ‘normal’; it’s not.  Basically, there’s a lot of shunt tubing in your peritoneal cavity- see the diagram! 
    That's a whole lotta tubing to move about!  Cool pic from neuroanimations.com

    That’s a whole lotta tubing to move about! Cool pic from neuroanimations.com

    The tubing is bendy and it moves about as you digest food, breathe and so on.  But sometimes it can be maybe a bit too long or just sit awkwardly.  That’s when it can get caught up.  Mine would catch underneath my diaphragm; the end of the tube dug into it and so it would move when I breathed in, jabbing deeper into the lining of the diaphragm.  Man. Alive.  I’m pretty good at managing pain but this really was something else.  You’ll know if it’s happening; sharp, stabbing pains which worsen when you breathe in.  I know three other shuntee friends who have had this happen to them; for two of us (myself included) it resolved on its own but not before several horrid episodes and even two hospital admissions.  For the other, a small surgery was needed to shorten the tubing.  If you think this may be happening to you, tell your surgeon.  Don’t leave it because it is painful and you’ll need to get it moved if it keeps up.  But to be honest the likelihood of it happening is remote.  So this is just a heads-up really….just in case!

  • Blockage/infection/underdraining/overdraining – these are the four main problems that can occur with shunts and I’ll cover them in another post another time.  They are each very specific and I’ve experienced all of them and two of them (infection and overdraining) quite a few times….but again, I do seem to be rare in that.  These are very much in the minority in their presentation rates and you don’t really need to worry about them; just know what to look out for.  I’ll link to the posts on each as soon as I’ve finished them.  They can sound scary but to be honest every time I’ve had any of them, the problem has been resolved quickly once it’s been identified.  Nothing is dangerous as long as you don’t do what I was starting to get good at, which is ‘not wanting to kick up a fuss’!!  So don’t sweat the small stuff as they say….because the chance of any of those happening to you is indeed small.

And that’s all folks!  The good, the middling and the not-so-good-but-rare.  If I think of anything else, I’ll add it on.  However your shunt makes itself known, remember to think of it kindly, even if it’s buzzing/gurgling/feeling tight.  Its keeping you alive, so it’s the best friend you could have.

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144 Responses to “How does it actually feel to have a shunt? – Living with hydrocephalus”

  1. Popi July 21, 2015 at 7:23 pm #

    How did you know you had an infection?what are the symptoms??I ve got some strange symptoms lately.

    • jordantheheadcase July 21, 2015 at 10:34 pm #

      Hi there,
      I always asked my neurosurgeon the same question; ‘how will I know that it’s a shunt infection and not just a virus?’. He always said that I would just know (after also giving me a list of symptoms). And boy, did I know! The first infection I had went to the brain end of the shunt and the second one I had (a few months later) went to the abdominal end. For the first one, I got a high temperature (39.5 degrees) and my head felt hideous! There was intense pressure in it and I could barely move it at all. In fact any movement made me cry out. I was very delirious with it and had never, ever felt so ill in my life. That’s when I knew with that one. With the second one, I had intense and worsening abdominal pain which mimicked appendicitis, so the diagnosis took longer. My blood count showed high levels of infection and when they sent a small sample of shunt tubing away for testing, it came back positive. But the pain in my abdomen was excruciating…that was the main symptom. In the end my stomach seized up and stopped working altogether. I’d say definitely headache, temperature, intense pain anywhere along the tubing, reddening of the shunt tract and actually, just feeling more dreadful than you’ve ever felt! Sorry to make it sound so awful but it is the truth; shunt infections can feel very nasty indeed. So even if you’re unsure, you must get yourself to the doctor quickly for some blood tests and notify your neurosurgeon with your concerns. Don’t worry about being wrong…it’s important they know if anything may be brewing. If it does turn out to be an infection, you’ll be in for a week or so of IV antibiotics most likely. And if it does take hold and you do feel dreadful, just remember all the time that it will pass. Easier said than done but I’ve got through two, almost back-to-back and both times I couldn’t believe how nasty they felt…but I got through them both and so will you. I hope it’s just a virus (not that I want you to be ill, I just don’t want it to be a shunt infection!) and I really hope you feel better very quickly. Good luck. Jordan

  2. Tom patrick November 26, 2015 at 2:11 am #

    I have had a strong since 2006 and I was wondering how affects your health as you age if anybody has any ideas on this please put it on the Internet

    • jordantheheadcase November 28, 2015 at 11:24 am #

      Hi Tom,
      I don’t know how having a shunt (I assume you meant that, even though it came out as ‘strong’?) affects a person as they age, other than the possible demands of the brain changing which may affect the shunt. My surgeon told me that as we age, the physiological make-up of our brain changes as well and therefore the pressure requirements may well alter too. So if we have a programmable shunt, we may find that we need more adjustments done as we age to accommodate the natural changes (and shrinkage) of the brain as we get older. Other than that though, I’m not sure. I know that shunts deteriorate over time so that may require revision or surgery in itself. Maybe some expert/surgeon reading this can shed some light! Jordan x

  3. Brian November 28, 2015 at 6:18 pm #

    When can the shunt be removed if ever?

    • jordantheheadcase January 26, 2016 at 12:23 pm #

      Hi Brian, gosh only just saw your post so very sorry for the huge delay! Shunts generally are there for life; it depends on what caused the hydrocephalus in the first place. If a tumour had blocked the drainage paths for the CSF and the tumour is then treated or removed, the drainage paths may open up again and therefore the shunt is no longer needed. But generally once you have a shunt fitted, you have it with you always. I’ve had mine switched off before to see if I could manage without it…I didn’t last long! I’ve not personally known anyone who’s had their shunts removed and managed without them but that’s not to say it doesn’t happen. It’s just not that common.

    • Karlos Long December 31, 2016 at 8:03 pm #

      Sometimes a Shunt is permanant ive had my Shunt since i was born it can be a pain to have sometimes because of the small pinching i feel from time to time. But it can also be a good thing because it saved my life…..

      • jordantheheadcase April 9, 2017 at 1:31 pm #

        Hi Karlos,

        I totally agree! Shunts can cause problems for sure…but without them we wouldn’t even be here! I know which I prefer, lol! All the best, Jordan

  4. Dee Strohl December 17, 2015 at 5:43 pm #

    Well I am one that my shunt pop out of my stomach and travel down to vagina for one year I was so sick they had to removed the whole shunt I was in the hospital for 53 days.Without God I would have died because I was so sick. Your posting was so helpful thank you

    • jordantheheadcase January 26, 2016 at 12:40 pm #

      Hi Dee, wow, I’ve heard of shunts migrating where they shouldn’t but you’re the first I’ve known who actually had it happen to them. I gather they replaced it? How are you coping with your new one? Jordan x

  5. Ste Keller December 30, 2015 at 11:23 am #

    Just come across your blog when doing some prep before taking my sister to see a neurosurgeon. Good to see that you remain upbeat despite the numerous revisions. Gill, was diagnosed with hydrocephalus some 6 weeks after a ‘traumatic’ birth and had a shunt put in immediately. That was in 1968 and she is still on the same 48 year old shunt. This was originally a VA shunt, but was modified to a VP in 1978 after the tube came away. Other than that, everything has remained untouched since. Gill, seems to have ‘fallen through the net’ since being discharged from Alder Hey in 1986 and despite being left with seizures and some discomfort, her neurologists have never seen fit to refer her to a neurosurgeon. I was in fact horrified when I attended a recent outpatients appointment and her neurologist stated that the shunt would no longer be required as she was an adult. Anyways, following another seizure, we took her directly to The Walton Centre, which has resulted in the current appointment. I would be interested if yourself or anyone following this blog could describe the sensations associated with under and over draining, as I suspect that she has been experiencing both. She often complains about headaches that get worse as she lays down. These can last for days on end. She also complains about the opposite, periods of headaches that lessen when she lays down. These are often accompanied with a metalic taste in her mouth. Thanks in advance and apologies for any typos I am just about to go and pick her up for her appointment, which is at 1pm today. Hope everyone had a good Christmas. Ste

    • jordantheheadcase January 26, 2016 at 3:44 pm #

      Hi there, sorry to hear about your sister. Underdraining and overdraining can feel very similar (if the overdraining becomes severe) so it’s really not helpful when that happens and you’re trying to work out which it is you’re suffering from! It could be that your sister has slit ventricles (her ventricles have become very small indeed due to overdraining). This can result in headaches both when standing up (due to too little fluid in the brain) and also when lying down (the ventricles are so small they take hardly any time to fill up and then hurt). If her shunt is periodically blocking she could also experience headaches both when upright and when lying down. But then again, if she has a programmable shunt, it could be that she’s simply on the wrong setting for her and needs to try a different one for a bit. By the way, I’m glad that you recognised the comment made by the neurologist stating that adults don’t need shunts as being complete baloney. Age does not determine whether you need a shunt or not; your symptoms determine that. Does caffeine help or worsen her headaches? Caffeine increases ICP so if she is overdraining it could help; if she is underdraining, it will make them worse. If I were you I would push for a session of ICP monitoring. She has a very old shunt in her system and it could well be breaking down at this age! But some consistent pressure monitoring will give you and the doctors a really good indication of what is going on. Best of luck and let me know how you get on. Jordan x

  6. Nick February 3, 2016 at 2:19 am #

    Recently my stomach got clogged up with fluid and I got ascites from my shunt draining there. In the first surgery they tried taking out the fluid and moving it to a different spot in the stomach. The fluid then built back up and they had to have a second surgery to externalize the shunt and check for infection. There was none so in a 3rd surgery they inserted the shunt in the gallbladder. Now I’m left recovering with a stiff neck and I can’t stand up straight. There’s also marks up from my stomach to my chest and one behind my ear where they accessed the valve to put in new tubing. Any advice on recovering and keeping strong and having to life with this problem? I’m 15 and this is the first real thing I’ve dealt with since 3 surgeries dealing with the shunt before I was 1. I haven’t been able to shower yet but at least I’m home. I’m not really sure how to clean my hair with that incision behind my ear. Thanks for taking your time to read this.

    • jordantheheadcase February 3, 2016 at 10:19 am #

      Hi Nick,

      Sorry to hear you’ve been through the mill rather. The first major surgery can be a real whopper; I still remember mine like it was yesterday even though it was 16 years ago. The stiffness in your neck is very normal; I couldn’t turn my head to the right (the side my shunt was on) at all for some time. The trick was to gradually try every now and then, a little at a time and to never push it further than whatever felt comfortable. I worried that I’d never be able to turn my head again, but needless to say I can! So don’t worry…the stiffness should improve over time. The scars will shrink a huge amount in time too. I’ve had 20 surgeries in the 16 years I’ve had hydrocephalus and my body is riddled with the things. Some of them have looked particularly horrendous after surgery (especially if they have staples in them – very Frankenstein!). The skin is an amazing healer and now my scars are thin, very faint papery lines, apart from a couple which are more pronounced as one time I was very ill and had to have 3 surgeries in 8 days, so the same scars were opened up over and over. You could try arnica – a homeopathic remedy – which is excellent for scarring. You can get it at Boots or Holland & Barrett in either cream form or tiny little white pills. I take it nearly every time I have a surgery and I’ve really noticed the difference in the healing when I’ve not taken it. It’s slower and the scars are more pronounced. So arnica could be a good move. Regarding washing your hair, you will need: 1 towel, 1 bottle of shampoo and 1 good friend or member of your family! Try holding a (very) clean towel directly over your scar (try and keep that side of your head tilted towards the ceiling, not downwards or the towel will get soaked with shampoo and water) and get a friend/family member to wash the rest of your hair which is not covered by the towel. Use a leave-in conditioner so all you have to do is rinse once for the shampoo. That’s how I wash my hair after surgeries or when I’ve got an ICP bolt in my head and it pretty much works fine. You do need two people to do it though and you do end up with a bit of neck-ache, tilting your head so the towel-covered part is pointing upwards. But it’s worth it to get rid of the gunky feeling in your hair!
      You’ve been very ill so give yourself time to recover. Once you’re home it can feel like you’re back to ‘normal’…but of course you’re not. It will take around 2 months I reckon to really start feeling back to your usual self so bear this in mind and don’t worry if you feel you can’t do everything yet, or if you just don’t feel like doing anything. Eat well, sleep as much as you need to and rest up. Your body will be working hard to recover and mend the tissues/bruising in your abdomen and so on, so don’t put too much stress on it.

      I really hope you start to feel better soon…one day at a time!

      Jordan x

      • Nick February 3, 2016 at 5:13 pm #

        Any advice on catching back up in school? I’ve missed most of the last month of my sophomore year and I’m not sure how I’m gonna make up all the work while dealing with all of this. They sealed up the scars with surgical glue stuff so I’m not going to know how it’ll look in the future, but right now the scar behind the ear is very noticeable in its current state and they had to shave up a bit to access it which will make my next haircut very uneven. I’m not too worried about scars on the torso those will only be seen at like the pool and things like that. Thanks.

      • jordantheheadcase February 9, 2016 at 10:22 am #

        Hi Nick, I’m not too sure what to advise you regarding school, apart from having talks with your tutors and seeing if there is a plan you can come up with together. You won’t be feeling this bad for (hopefully) too much longer so there may be a good chance you can catch up. Have a chat with them and express your concerns…they must have come across students missing school for illness reasons before so they may be able to sort something out for you. Jordan x

  7. Tom February 12, 2016 at 10:03 pm #

    Anybody out there really mind The cold when they’re Shuntwas not working properly

    • jordantheheadcase March 6, 2016 at 11:26 am #

      Hi Tom,
      You know, I think many people have problems with the weather if they have shunts. I find season changes challenging (particularly Summer to Autumn) and I know a lot of people who do find the cold hard-going. Obvious tip but try wearing a warm hat…works wonders for me! Jordan x

  8. Kelsey mcCarthy March 11, 2016 at 5:56 pm #

    Just found this at the right time when i needed it most. Feels good to know other people go through what i do, next month i’ll my having my 16th surgery since i was 16-18 months old and funny to say it but the doctor doesn’t know what he’ll actually have to do until he’s in my head which makes everything stressful and scary. Nobody around me understands cause i’m the only one that has this in my family/friends and sometimes you just need someone who can feel the same emotions like you do.

    • Dolores Strohl June 7, 2016 at 11:53 pm #

      You are not alone. My body rejected my shunt and I had it removed it was emergency. I was in the hospital for 53 days. Got will protect you.

  9. kayla armstrong April 18, 2016 at 4:15 pm #

    your blog as helped me understand more. My husband is currently recovering from cerebral bacterial meningitis. The next step the doctors were saying is to give him a shunt when they told me i had no idea what that was. I now understand or life is about to change drastically. We are only 25. thank you for writing this. I was so scared that he might not be the same after. But reading this makes me have hope.

  10. Aaron Smith May 1, 2016 at 6:50 am #

    I’ve had a vp shunt since 1984 when I had two, one on each side. These were in for less than a year before one wrapped up and was digging into my diaphragm. Simultaneously, I was having appendicitis, making diagnosis difficult. I couldn’t be x-ray’ed because I couldn’t breath unless in a fetal position. So I was given an emergency exploratory surgery. They started blow my sternum and kept going until they finally found that my appendix was ready to burst. Prior to removing it, they decided to remove the shunts just in case it did burst during removal. I went about a year without one until I started having dizziness again (one of my original symptoms).
    At that point, it was decided to install a new shunt. This new NS joined the ventricles, making it possible to have a single shunt. This was 1985. Sometime over the next few years, the tubing broke loose. I saw a NS about it after it was discovered during a x-ray and was told not to worry about it because the shunt was working properly, but the CF was draining into my neck.
    I still have that shunt today. I know it’s working, as I can always hear the fluid sound behind my ear when it opens.
    I’m 47 years old, and had my first shunt at 14. I’ve had I consider myself blessed to have avoided the multiple surgeries that so many go through. Things have not been perfect, but I have a pretty normal life. But much of that is due to adapting to life with a shunt. I still wonder sometimes how many things that make up my conscious life are different because of the way my brain works. But that kind of thinking can easily get the best of a person. I find it important to worry less about what might be, and work with what is.

  11. Sara Z August 29, 2016 at 3:25 am #

    Hi, I came across this post while doing some research for my little sister. She had meningitis when she was a couple months old and hydrocephalus as a result of that. They performed surgery on her then and inserted a shunt. Now she’s 19 years old and her shunts been replaced twice. The first one was when it stopped working because it broke when she was around 12, then again a couple years after that. In the first one her symptom was a really nasty headache with nausea, the second was headache and extreme abdominal pain. She has multiple other problems because of that, the biggest: her learning disabilities. I feel like we weren’t that informed when she was a baby and didn’t do all that we should have and she suffers because of it. She doesn’t talk about it much because well she doesn’t remember anything from the first time around, and the other two surgeries she just remembers the pain. We’ve always been cautious with her doing anything that requires even a little extra strength, be it mental or physical. Do you all suffer from limitations like that? If so, how do you get past them? Can you all work out, do yoga or other stretches? My mother thinks it would make her tubing stretch out too. I really want to help her out and she wants to join a gym class but I don’t want to force my mother into letting her down it but then suffer later! Any insight would be much appreciated! And I’m so sorry if I sound completely uninformed, but I am and I’d really like to change that.

    • jordantheheadcase April 9, 2017 at 12:51 pm #

      Hi Sara,
      Firstly, apologies for the mammoth delay in responding to this! I know that lots of people with shunts (myself included) work out and really benefit from it. The shunt tubing is designed to cope with lots of natural movement; I think the best thing is for her to just try what she wants to do. She’ll soon know if it’s too much, but I can’t see how it would do any damage to the shunt itself. Ball sports are best avoided (heading footballs etc!) but other exercise can be hugely beneficial as well as helping with depression, sleep problems and so on. I run a lot; it hurts my head when I do it but it’s temporary and the long-term benefits are so great that I feel a lot worse when I can’t go running. Jordan x

  12. Pete September 4, 2016 at 7:30 pm #

    has anyone any info on a shunt ‘RIGHT MEDIUM LOW FIXED PRESSURE SHUNT’ that’s all I know at the moment, my wife has just had one fitted.

    • jordantheheadcase April 9, 2017 at 12:55 pm #

      Hi Pete,

      Sorry for the huge delay in getting your comment published. Did you find out your wife getting along? Jordan

  13. Brendan Dwyer October 5, 2016 at 3:16 am #

    I have a slight concern, I have had numerous operations over the years. I have 2 VP Shunts, one on each side. The one on the left hand side has been blocked for quite a long time now and the Neuro surgeons said they no longer operate on the left hand side of the head. Quite recently there I got rushed into hospital due to unbearable abdominal pains. When I went to A+E the first doctor to asses the problem sent me up for a scan of the abdomen. The results came back and he thought looking at the CT Scan that it was bunged up faeces, the second doctor that had just came through the door was a neurosurgeon and he said “No that is a pseudo cyst in the abdomen caused by an infection of the shunt tubing and you need to get immediate surgery. At this point my mum burst into tears because of the shock. Once in the operating room they made 1 or 2 incisions, 1 for to drain the cyst and 2 just below my lung as they said my new shunt will be ending at the lung and no longer the abdomen as this is where the infection is and that if put back there, there could be a risk of it reoccurring and it would be extremely risky as there is now too much scar tissue on both sides of the Abdomen due to numerous operations. They also added if the new shunt fails which will be placed into the underneath the lung where the tissue is, then your only other option is the heart chamber (cardiac atrium) so I chose The pleural (lung) cavity and I had this done 2 years ago. The only downside to this is. When trying to sleep at night I Struggle because of the pain around my eyes and also the back of my neck where the cerebro-spinal fluid valve is.

    • jordantheheadcase April 9, 2017 at 12:59 pm #

      Hi Brendan,

      Thank you for your post and my apologies for the delay in getting it published; I’ve had a lot going on the last few months. How are things now? Are they any better? It sounds as though the pressure may be a little too high if it’s causing you problems when you lie down. Are your shunts programmable? I wonder if so if you can have an adjustment downwards? Jordan

  14. Andi November 3, 2016 at 12:23 am #

    Hi my name is Andi…. I like to say I started in this business a good 25 years ago. I am going on my 29 the revision. I asked my surgeon how many more I needed to be in first place at my hospital he said there was a guy that had 30 shunt surgeries. I’ve had it all…. revisions,infections,malfuntions,the one time they even left something in me. I’ve had a cva I have an Oligodendroglioma I had to have a splenectomy. Spinal meningitis and a few other things can’t quite remember right now. The tumor only gave me 7 to 10 year survival and I am 15 years past that. Just recently found out it is growing back but just hurry up and wait! The moral to my story….. God is good and I wasn’t supposed to have kids but I had 3 beautiful boys and lost my daughter cause of this crappy hospital here. They told me I would be laid up for a week when they resected the tumor I was sprinting the halls the next day. It’s just where your mindset is! If you say your gonna die then most likely die. So just keep your head up.

    • jordantheheadcase April 9, 2017 at 1:18 pm #

      Thanks for your comment Andi…sounds like you’vas you say, e been around the block and then some! I’m sorry to hear you’ve had some hard times too but as you say, we have to just keep doing. It sounds as though you’re doing really well though so long may that continue. All the best, Jordan

  15. Life Jones November 18, 2016 at 3:21 am #

    Hello, my name is Life. I got my shunt put in May of 2016 But I’m still experiencing really bad headaches. Headaches that makes me feel like I’m dying. Is this normal? And I do not hear any sound from my shunt. But I trust God. Can someone share their view on this please thank you.

    • jordantheheadcase April 9, 2017 at 1:20 pm #

      Hey there, sorry it’s taken so long to get a reply up..how are you now? Headaches that bad are not normal; it could be your pressure is not right yet…is it a progammable shunt that you have? It can take quite a few months to find the right one after a surgery. Do talk to your surgeon if it’s still continuing. All the best, Jordan

  16. Lizzy Price December 8, 2016 at 3:43 pm #

    Can you maybe help me as a fellow hydrocephalus sufferer!!

    My name is Lizzy and I was diagnosed with hydrocephalus when I was 20 and had a shunt fitted, which I still have 16 years later. My frequent ‘mirgraines’ stopped after having the shunt fitted. However about 2 years ago I started getting progressively worsening headaches that only ever come on when I’m sleeping and laying down. The headache:
    1. is always behind one or both eyes (feels like someone is pulling on the back of my eyes). Runs down my face through my ears

    2. Only happens when laying down sleeping

    3. Is a constant pain not pulsating. Never lets up. It’s a horrible pain where all you want to do is sleep but it prevents a restful sleep

    4. The headaches wear that off after being stood up and mobile for about 30 mins

    5. The headaches are a nightly occurrence, however I’m now on medication (amitriptyline) that helps with managing the headaches and the frequency and pain is much better as they were starting to affect my everyday life

    6. When I was pregnant the headaches stopped completely and as soon as my baby was born a week later BAM the headaches returned!

    My question is…have any other hydrocephalus suffers experienced the types of headaches I’m having and was it related to your hydrocephalus?

    I’ve seen a neurosurgeon who had said it’s not related and a neurologist who has said it’s tension headaches…however I’m not convinced and suspect something isn’t quite right with the shunt when I’m in a horizontal position!

    I’m going back to see my gp as recently had an emergency admission to hospital because of what I learnt was a suspected infection in my shunt, which was cleared with a bulk load of antibiotics…I’ve never had an infection in my shunt before.

    I’m interested in hearing other people’s experiences that might be similar to what I’m going through so I can gage whether this is normal for a hydrocephalus sufferer!

    • jordantheheadcase April 9, 2017 at 1:30 pm #

      Hi Lizzy,
      Thank you for posting and I’m sorry it’s been so long in getting all these questions up. To me that sort of headache sounds as though it could be shunt-related; have you tried propping the head-end of your bed up on bricks or books and seeing if that helps? I sleep with two pillows and my bed is raised on two bricks at the head-end; if I lie flat my head can’t handle the pressure. Everyone is different. If propping your bed up helps, I’d say to go back and see your surgeon (or a different one) and have another chat. It could be you just need to adjust your shunt setting down a notch. High pressure is worse when you lie down and better when you stand up…that’s pretty much what you described! Keep me posted. Jordan

  17. Marie February 6, 2017 at 6:39 pm #

    I have a Codman Programmable Shunt since 1995. Thank God, I don’t have any complications, but I just need to lie down and complete bed rest when I am tired or experiencing a headache.
    Is this the same for you?
    Thank you.

    • jordantheheadcase April 9, 2017 at 1:49 pm #

      Hi Marie,

      Thanks for your post. I wouldn’t say I need to lie down but I would say I get tired far more easily these days! Working wears me out, socialising wears me out…I have to be careful with how much I do otherwise I get bad headaches and then it’s a downward spiral. Glad you haven’t had any complications as such though…that’s great. Do what you need to do to feel well. Everyone is different and we just have to find the beat of our own drum. All the best, Jordan

  18. Debbie Bristol March 20, 2017 at 11:38 am #

    Thank you for writing this. I have a Codman vp shunt it was placed in July 2016.

    • jordantheheadcase April 9, 2017 at 1:59 pm #

      You’re welcome Debbie. I hope you’re doing well with it? Jordan

  19. Joyce webb May 2, 2017 at 5:05 am #

    Awesome real life descriptions. Thank you so much. My sister recovering from 2 strokes and 2 brain surgeries is now faced with possible shunt. Some family members reluctant to insert. The best advice you give is “..:.see the shunts can be problem free for many people and the clever little devices keep you a live which frankly Rocks!”
    Thank you and best of luck. Keep blogging you are so inspirational and a great writer!!

    • jordantheheadcase June 27, 2017 at 2:38 pm #

      Hi Joyce,
      Thanks so much. How is your sister? Did she have the shunt fitted? If so how is she finding it? Jordan x

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