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:
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!
- 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.
- ‘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. Now 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 valve – pretty 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.
- 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!
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.
Fantastic reading Jordan, I can relate to it all..:)
Thanks hon….yes, it’s all rather familiar, isn’t it? 🙂
I realize that I found your blog 7 yrs after your posting..However; Finally! Someone I with whom can relate! I actually have tears in my eyes right now. I have made pc with my shunt (on my 2nd Codeman & 1 revision all within 2 yrs.) Over the last 3 months It has acted up, caused convulsions, frustrated me, & probably has my surgeon thinking I am crying wolf. Thank you for confirming some of my issues & showing me the importance of finding groups to bounce off of. I need it. ❤️ Chef Teresa Martine
Hi my son had a vp shunt at 8days old, reviewed at 4yrs he will be turning 30in November. He’s currently in hospital presenting with seizures and a stabbing feeling in the shunt area,confusion. But the ct scan shows no problem, this has been happening frequently over the last 6 months. Has anyone else had similar problems?
Omg! Soooooo needed to read this! I had my shunt Op at Queen sq 8wks ago by Mr Watkins.
He’s a cool dude, n’est pas? The good thing about being under his care is that he’s got the best team possible and you know he’ll never give up until he’s solved the problem. I’ve never felt in safer hands. And he’s my third neurosurgeon. I’ve already warned him never to consider emigrating.
Jordan post it in hydros unite 🙂 im sure theay would find it really interesting xx
You’re truly a hero. Reading about conditions like these remind me how lucky I am to not have to manage serious issues like the ones you handle – it humbles me. Keep up the wonderful quest!
Thank you so much. I’m a bit behind at the moment as I’m not very well with my own shunt but things are still progressing!
And I will be hoping for nothing but the best. Keep strong!
My 21 year old daughter is having a fyzzy head couple of days. She likes to lie with her head on the floor. We are trying to blame the sudden increase in temperature in sunny old Adelaide. Which is how we ended up on your blog.
Anyway she will make herself go to work tomorrow, at a job she loves.
I really really enjoyed your writing and the sentiments and feelings are exactly what she experiences every week and every day.
HI Brenda, thank you for your kind comment and sorry to hear your daughter is also having a bad head time! Does she have hydrocephalus and/or a shunt? If she prefers lying down, maybe she should try a caffeine drink (not too strong but maybe a coffee or some Coke) – this can help with headaches which are eased by lying flat. Hope she feels better soon! Jordan x
I’ve had a shunt since birth and I’ve had it operated on twice… the first time I think they just replaced the valve part and the other time I had a whole new shunt put in… its nice to know that even though its been 12 years (I think) every time I have a headache that lasts longer then I think it should (ie. weather or hormones) I freak out.
Hi Jenn. Wow, twelve years – that’s amazing! The longest I’ve lasted without needing a shunt revision has been nearly two years! I think it’s part-and-parcel of the condition to worry every time you get a bad headache but in my experience your body just ‘knows’ when it’s a shunt headache and not a natural one. Instinct counts for everything! Glad you’ve had such a good run with your shunt and long may it continue. Jordan x
Did you have a bleed if so what grade?
My son has hydrocephalus and I’m freaking out
I’ve had a headache for a couple of days (like a tension headache… back of head really hurts) do any of you get a little concerned (especially us women who get headaches during our cycle) not knowing if its stress (like I’m going through) the weather (its quite cold here in Ontario Canada lately) or if its actually your shunt… I’m making myself crazy trying to figure out what it is… even though I know the symptoms of when to worry that its my shunt
Hi Jenn, sorry for the delay in replying; Christmas and all that! It is tricky sometimes to determine whether a headache is shunt-related or just a ‘normal’ headache, but I have always found that gut feeling can be a huge help here. If it somehow just ‘feels wrong’, chances are that you might do well to get it investigated by your surgeon. I get headaches if I haven’t slept enough, if the weather pressure is changing or if I’ve overdone things. But I do also get headaches if I’ve done too much computer work and I am certain that’s not my shunt! That’s just too much computer work! At the end of the day, if it’s worrying you, get it checked out. Always better to be safe than sorry! Jordan x
My 8-month old baby girl has just been diagnosed with Hydrocephalus. We have a consultation coming up next week with a neurosurgeon. Thanks for this information. It’s a much better read than third-person information! I’m scared that she will be ridiculed throughout her life. We do live in a vain world. However, I trust God with all my heart and his will is fine with me. How should I talk to my 8 year-old son about it?
Hi Jody, so sorry it’s taken me this long to reply; I’ve had a busy week! I’m sorry to hear about your daughter. I think the best course of action is honest communication with your son; he may be picking up on your anxieties and be feeling worried. Hydrocephalus can be very well managed from birth so as long as you have a surgeon you trust and who listens to you, hopefully she will always receive quick and effective treatment when she needs it. There is a character called Benny Bear created by Shine UK which might be good for helping your daughter understand what’s going on when she gets a bit older but I think it might be a bit juvenile for your son? Here’s the link anyway: http://www.shinecharity.org.uk/bennybearbooks.
And here is a little cartoon I found which is quite good at explaining the basics to slightly older children so maybe your son could watch this – it’s only a couple of minutes long (http://www.youtube.com/watch?v=qUXiypYT1IQ). The thing is, your daughter may be largely unaffected by her hydrocephalus until the shunt needs changing over so it’s hard to know how much you should tell your son. I think definitely let him know she may need surgeries on her head sometimes (because that will almost certainly be the case) and that sometimes she may have headaches or might feel a bit grumpy if she isn’t feeling well. I think if you answer any questions he has as well as you can, that’s the best thing. As to the ridiculing issue, to be honest I think that may not be as big a problem as you fear. Again, it’s all down to communication. Unless she’s just had a surgery, in which case she’ll have scars on her head, 9 times out of 10 people won’t realise there’s anything amiss. Most children with hydro can walk, talk, run, shout, have tantrums, get excited over ice-cream and pretty much do most things that any other child can. If you can be open and honest if any child/mother asks questions, you’ll open up the communication channels and this should help understanding and ultimately reduce the likelihood of her being picked on. As long as she knows she is loved, is special and is a very brave girl, she’ll have the strength she needs to deal with this. As for you, talk to your surgeon, talk to your family and friends and maybe try an online forum where other parents of children with hydro gather; you can get huge support there. Do whatever it takes to make you feel confident and supported. Jordan x
Hi there, thanks for the information, I found it very useful, since this is all so new to us!
After an mri, we’ve been asked to make the choice whether to book the shunt surgery now, or wait another two months to see if her head “levels out”. In the meantime, we are going to closely monitor her head growth and pray hard! (The risks of a shunt scare the heck out of us). The neurologists said her brain is functioning perfectly, and there’s no pressure. They said in the fluid is just not absorbing the way it should.
“To shunt or not to shunt, that is the question”. I’ll keep you updated, and would appreciate your opinion as well!
Hi Jody, sorry for the delay in replying. I was kind of given a choice as well in the beginning. It depends on how you feel…if you can cope fine, then there’s no need for a shunt really. If however you are suffering all the time, I think the shunt option needs to be explored. In the end my symptoms simply didn’t improve so we had no option! Keep me posted. 🙂
=) hi! I had my VP shunt fitted last August 7, 2013. I am so delighted to read every details in this blog, as I learned more about it and made me less worried as what I am feeling is just normal. A weird feeling when the weather is cold, I am feeling the cold more as others. I am sleeping with hot bags, sun bathing with all the jacket and bonnet on. That’s how I am feeling the cold weather. I live in the Philippines where the climate/weather was fine. Summer/ hot weather made me feel hot inside, and yes pulling/stiffness feeling at the neck part where the shunt goes down. I feel like my heart is suffering from palpitations/ nervous whenever I am stressed or thinking much.
Right after the procedure, you can feel the brand new you! Having bladder control again, able to walk again ( tho still unsteady with my gait ) that I am thankful for, cognitive problems subside, better appetite (but I noticed that I am easily feel the fullness), better, better you! You’ve learned to appreciate even the smallest things/deeds. Grateful for this life, shunt is indeed our best friends!
How is the feeling being pregnant with this shunt? Is it possible?
Hi there, thanks for your comments. I know that pregnancy is possible, but everyone is different. I’ve never been pregnant and I decided some years ago that I wouldn’t become a mother (after spending the majority of my thirties in and out of hospital….didn’t really leave enough time to date sufficiently to secure a ‘daddy’!). Sometimes natural birth isn’t possible (due to the pressure in the head caused by pushing) so a caesarean is the only option. But women with shunts do indeed have babies. As long as you have a good doctor and a good surgeon there’s no reason why it shouldn’t be a possibility.
I’ve just had a shunt replacement after 27 1/2 years!! My shunt broke and the neuro just pulled from each end to remove it . However there was a 5cm gap in the shunt, shown in the x-ray they took before surgery, and I have this awful pain in my chest. Could it be the left over piece of tubing they didn’t/could take out? What do I do?
I’ve named the left over piece of tubing (stuck in my chest) Edwin, after the middle name of my neuro.
Ouch! Sounds painful! You should alert your neurosurgeon or registrar to this issue…it may be unrelated but if you have a concern regarding your shunt, you should always let them know. Good communication between yourself and your surgeon is key! Good luck. 🙂
I’ve had my VP shunt for 13 years now (which is quite wonderful considering im only 14) As an infant I was born with a blood clot located in one of my ventricles (The third one i believe?) which stopped the flow of Cerebral fluid. I had no idea that any of these things occurred with shunts, I feel truly blessed not to suffer from them. The only problems I have that may be linked to my shunt consist of occasional fuzziness (days where everything seems blurred, i’m super tired, and feel like crap), and a swollen lymph node located next to the tubing traveling down my neck. I suspect that it wont be long before I experience troubles with it, however I’ve been told that my condition is treatable by an Endoscopic Third Ventriculostomy, so maybe I wont have to have a shunt all my life. Its great that there is such a community for hydrocephalus patients, and it could prove helpful to have some insight into what may go wrong and how to know. Great article, thanks for the informational read!
Hi Cory, thanks for your message. And yay for getting to 13 years with no revision! The longest I lasted was 2, lol! I agree that the community for hydrocephalus peeps is good now; when I was diagnosed 14 years ago, there was barely anything – I didn’t even have the internet then! So it’s a great comfort to be able to communicate with so many others who know exactly what you’re going through. Keep on keeping on because it seems you’ve got this shunt lark sussed! Jordan x
I was born 3 months early and I had a vp shun,t I’ve had about 6 surgery since then I was born on September 14 1991 I’ve noticed with me when the weather is really cold my scar on the back of my head hurts alot!!! Sometime the shunt it self feels like it’s apart of me and hurts really bad!!! I enjoyed making up stories about my scars sometimes if I really like the person I’m talking to i will tell them the truth. my parents never let me do any sports cause if my shunt but that’s ok. I’m always watching out making sure no one hits my head.
I have a shunt and I’m 16 mine has been working for 15 year and it is a vp shunt but recently it has blocked then a few days later I had another operation because the tube and the ventricle wasn’t connected probably then the third time I got an infection and now I have had 4 operations in 3weeks and starting to get head aches at the front and that is usually the symptoms of there is something wrong with the shunt, hopefully nothing is wrong . When your shunt is infected you have to a external drain, one of the most uncomfortable things ever!!!!!!
Hi Liam, sorry to hear you’ve been through a rough time recently. I agree, shunt infections are horrible! I’ve had two and I didn’t enjoy either of them! I found the external drain more of a nuisance than anything else. I hope you start to feel a lot better soon! Jordan x
Hi Jordan, I like your blog a lot. I am 33 years old, my first revision was at 3 months of age and I have had 10 revisions, my last one was in 2000. As I was growing up it was difficult at times, because there was not much information about it. I would say it has not been easy, but I live intensely my life. There has been times when I have postponed things them I find myself not been able to do them because Im sick or I am at the hospital.
It is funny I find that weather changes affects me a lot. I am able to know 10 minutes before it is going to snow lol. also, heat, full moon and eclipses affect me a lot.
I have discovered that Indian head massage is excellent to prevent and treat headaches caused by stress. I am very sensitive to stress and I get overwhelmed easily.
I would say my two biggest issues is the “Cocktail Party Syndrome”. it is basically not been able to control what I say to others. it is very bad because it can get me in trouble. it is usually present when I am tired or stress. In those cases, I try my best not to say anything to be safe. Also, I noticed my reasoning could be pretty deep. for instance when I give an opinion about something it is not something people would think. It does not mean it is bad, I have been told it is an excellent idea or solution but very deep. My mom have told me normal people do not think that way. It could be annoying because people look at me in a very strange manner. I have learned to keep those deep thoughts to myself or share them ‘only’ with my husband and mom.
Also, I noticed I get overwhelmed easily, and I feel like my brain is disconnected from my head. many times do not know how to handle it. it gives me a lot of frustration.
Thanks for sharing your experiences. Oh, I totally agree about the weather thing! I’m better at predicting the weather than the local weather station. It seems that lots of us don’t like very hot summers very much and yes, full moons too. I have a few friends who have a very bad head episode and not understand why, then will look back and realise it was a full moon that night. I haven’t personally experienced the ‘cocktail party syndrome’ (love your description for it!) but I shall ask about it on my hydrocephalus forum that I belong to as it would be interesting to find out more about that.
Regarding getting overwhelmed, that is totally normal. The best thing is to take a break from whatever you’re doing when that happens…whether it’s work, socialising, doing the crossword…whatever…and give your brain a rest. It will only cause you more frustration to try and push through the ‘block’ that your head is experiencing. I find that happens to me when I’m doing a lot of work on my shunt donation project; there’s so much to read about and remember that sometimes my brain just says ‘right, enough; I’m going for a cup of tea’, and literally stops working! When that happens, I stop working and go for a cup of tea too! I’ve learned that that is the best way to get back on track…take a half hour break and go back refreshed. You’ll often find that things have got back to normal during that time. Keep on keeping on, Johana! Jordan x
Hi I had a shunt put in almost 4 weeks ago… Some things are concerning me and I don’t know if they are normal… The pay/4 days I stayed getting stabbing pain in my right side of my stomach and into my pelvic and I don’t know why… Also I stayed getting passions on my right rose (where my shunt is) it’s like the pains are right below my ear in my neck and they go up to the top of my head where the u shaped incision is its like I can almost follow the pain by my tubing in my neck threw my head… is that normal did you or anyone ever experience that???
It’s very normal indeed to experience very strange feelings and sounds after having a shunt put in, which is why I wrote these articles in the first place….the doctors don’t always tell you about the little things but sometimes it’s those little things which worry us the most! Sharp stabbing pains are not uncommon. I had some bad ones in my stomach and also on my head where the scar was…both were caused by the formation of scar tissue, which happens naturally after a surgery. You may find that these disappear in a few weeks. If you’re having any physical symptoms such as a fever, bad headache, nausea or drowsiness, you should of course contact your surgeon or local hospital asap. What we don’t realise as patients is that putting a shunt in is actually quite a vigorous procedure for the surgeons! There is a lot of hard pushing on the shunt tubing, threading things right through your body to get the catheter down and there is also not much in the way of protective fat over the skull and chest…these places are where irritation can occur for many shunted people. My tubing gets irritated across my chest sometimes and then goes away again. Regarding your pains, I would look carefully to ensure you’re not getting other symptoms of anything shunt-related (like the drowsiness, nausea I mentioned above) and also check for signs of redness or weeping around the scars/tube line. If they are all okay, it’s likely to be post-surgical pain, bruising and general discomfort which will likely go way in a bit. If it is scar tissue and it continues to be a problem, speak to your surgeon; mine gave me some very effective painkillers (in the end I needed to have the scar tissue removed in a small surgery but it doesn’t usually come to that). Good luck and I hope you start to feel better very soon! Jordan
Thank you so much. .I have a follow up on tuesday with my surgery because my back incision in my head got infected…and of course I will bring this all up to him also. .. and about the headache part I stayed getting headaches of course they are more different then the pressure headache but i just always thought it was from doing to much since I have 2 kids. .. is it still common to get headaches a few months after a shunt
To be honest, headaches are very common with hydrocephalus in general. I have a headache 24 hours a day but of course, the severity of it varies and it is generally okay…my body is used to it. It is only when I’m ill/tired/have worked too much/the shunt isn’t right that things get really bad! So yes, I’d say it’s very common to still get headaches. Hopefully for you they’ll disappear in time though. If they persist I’d see what I can do about easing your workload, whether it’s with the children, work – whatever! I’ve learned the hard way that if I do too much, I get bad headaches and if I don’t stop, I usually end up back in hospital. So now I’m very careful about the amount of work I do and as a result I’ve had a much better time of it lately. Your body will tell you when you’ve done too much…the trick is learning to really listen to it and act accordingly! So much easier said than done, eh! Jordan x
So I had my doctors app this past week and he told me the pain in my head and neck is normal but it hurts a lot and very annoying… on the other hand he did seem pretty concerned with the pain in my stomach.. He did labs to check for an infection and a ct to check for a sack that fills with fluid acting as a cyst due to the surgery.. I haven’t heard about the results yet… kinda nervous about it..
Hi Wendi, yes, fluid cysts in the abdominal cavity can occur..I had one after my last surgery (for shunt infection; the stomach end of the tube was externalised into a drip bag whilst I was flushed out with antibiotics) and when the tube was replaced into my stomach, it went straight into the fluid cyst, so it didn’t drain properly. I ended up with high pressure and had to have the tube replaced and the cyst removed. It’s a minor procedure to get rid of it though so don’t worry too much. And if the cyst was affecting your head pressure, you’d certainly already know about that! I would press for some effective pain relief though; he should be able to prescribe you with something a lot more powerful than over-the-counter meds until this settles down for you. Jordan x
I was thinking about seeing my regular neurologist instead of my neurosurgeon and see if he can help… bc the pain in the right side of my head is to much sometimes
Ah yes, if you have a neurologist he/she can probably help with the pain side of things. I only have a neurosurgeon as all my problems require surgical interventions! Good luck with it. x
Yes I was sent to a neurologist and then to a neurosurgeon. . Thank you and I hope things continue to get better for u
My Gosh iv learnt so much! Iv been living with this shunt for almost 12 years. I’m 28 now. But each time research about the shunt, find more info. To this site: I’m here to stay! For sure!
Great to have you on board, Felicia! 12 years with the same shunt is great going! I’ve only lasted 4 years so far with any one of mine. Hope it continues for a long time yet! Jordan x
This is so intresting & can relate to it all. I’m now almost 28 & had my shunt put in wen I was 16 & in matric, due to hydrocephelus. I had 2 strokes befor it was detected. Thank God for my neurologist & neuro surgeon! I had the newer model vp shunt inserted , which blocked while stil in a coma, now living with the older model. At first thought my life was over because I was so restricted on so much. But now just pray, & threw God all things are possible.I don’t ever tell myself I can I do everything. I experience all the effects mentioned. Its so good to see & hear so many success stories. I love kids & want to find out how safe is it to fall pregnant?. Thank u so much for this blog
Hi Felecia, thank you for sharing your experience. Regarding pregnancy, I know that many women who have hydrocephalus go on to successfully have children. I think it would be wise to speak with your neurosurgeon before you plan to get pregnant however, just to discuss any issues that may arise as each person is different. You may not be able to give birth naturally if you’re very pressure-sensitive, for example. At the very least, see your doctor first! Jordan x
Hello Jordan! I,m about to have the op for a shunt in the coming months after having a third endoscopic ventriculoctomy and it has,nt worked.I,ve read alot about shunts but its nice to find a site as yours that is straight forward and no doubt there talking about another 6 months i,ll be on the site regular if not before!I,m a 50 year old man and am wondering weither my age is a + or -?Thanks Jordan,Mark X!
Hi Mark, thanks for your message. Hope the surgery goes well for you. And age is irrelevant! We’re all ages here! Jordan x
Great reading. Thanks for sharing your experiences. I had forgotten, until recently, that no one seems to understand the problem. You guys do.
My VP shunt was implanted in 2000. I was 40 years old, and my surgery was considered an emergency 72 hours after my first visit to a GP. I had horrible after-surgery headaches for a year, or longer. I’m a big baby, because I rarely have headaches at all. About 9 months ago, I started falling down. No dizziness. Just BAM and I’m on the ground with asphalt rash and sore joints. Then I noticed that I was bumping into the door frames in my house. In the past couple of months, I’ve become very unstable, Standing and walking are very precarious. Climbing the stairs in my house is a nightmare. My memory is terrible, and after about 4 hours awake, walking begins to feel very burdensome… almost like trying to walk underwater. I’ve begun having headaches, with increasing duration and severity. A friend now tells me (“Gee, thanks!”) that I have been stumbling around for at least 2 years. I have another friend who’s a Neurologist, and he suggested I come in for an exam. There were 3 possibilities, but we believe the problem to be shunt malfunction. I’m waiting to get scheduled with a Neurosurgeon to confirm the shunt malfunction and have it corrected. Getting in to see a Neurosurgeon around here (Atlanta, GA, USA) is like trying to find a seat on a bus in a third world country. After a fall and hospital admission last week, I spent 5 days in the hospital. Still no visit from a NS, so I left the hospital against medical advice. I’m surprised, because my first NS told me to “Go enjoy life.” my shunt was ‘good’ for 100 years. He’s since dropped off the planet.
I hate that I didn’t recognize the symptoms sooner (to improve my quality of life), but I’m looking forward to post-surgery. Last time it was as if I’d come out of a fog. Everything was so much more vibrant after surgery.
Best of luck to any of you who may be sharing the same experiences.
Yes, I’ve definitely had “Cocktail Party Syndrome” (LOL at Johana!) preceding both my shunt experiences. I’ve known it was an issue, but I didn’t have a name for it, and don’t seem to be able to resist the temptation to say whatever pops into my head.
This was good to read, thank you for writing it. I just saw Mr Watkins at the National last week after he was recommended to me as having shunted for IIH without pressure on the optic nerve or eye issues, i went up there expecting the same as the last two surgeons… strait out NO… but he was the kindest and cheeriest doctor i have met in a long time, if ever and he seemed to have already decided to say yes, so after 26 years of pain i am getting an LP shunt in the next three months! I am still somewhat shell shocked that he said yes, i had been begging for this for the last two years after painkillers finally stopped helping. He seemed shocked that no one had helped me in all that time. My local hospital now say they don’t have a doctor who can do an LP!! So i will have to ask Mr Watkins if he can arrange one while i wait for surgery. After all this time its hard to be optimistic but i am trying to now.
Brilliant news that you’re getting a shunt! Hang in there…it’s a bit rocky after the procedure and could take a while to get the pressure right…but you will feel better in the long run. Mr Watkins is such a lovely man; he’s patient, he’s kind, he takes patient confidence and comfort into consideration (which to be honest quite a few surgeons don’t; they think of the procedure and the benefits first and foremost) and he doesn’t give up on you either. Really happy things are finally moving ahead for you. Have confidence in him and in yourself and you will be so much better than you have been. I would bet money on it! Jordan x
Hi Jordan, I’m out of hospital now, tummy is tender but ok, unfortunately having “low pressure” pain but everyone insists it’s normal pressure just my brain is not used to that, either way I’m stuck in bed other than visiting the bathroom, my insides “pain” around my bladder all I could find out so far is it could be the csf aggravating my insides as I don’t have a bladder infection. I’m kinda annoyed to be left to fend for my self with low when they could have adjusted it while I was up there, the journey home was horrific to say the least, going back up with low pressure! Ain’t going to happen! If my local hosp had an adjuster it would make life easier but they are so appalling I dare not ask.
This is a fantastic blog and I want to congratulate and thank you for putting it together to help inform others with similat condition whilst you have been suffering yourself.
My son 21 has recently had a VP shunt fitted after raised intracranial pressure and papillodeoma (sight loss) due to raised CF which can’t be drained naturally and only 4 weeks after the 1st op had a revision as the valve failed. He had been suffering headaches for over 12 months before a GP eventually took any notice as his sight was at risk.
Like you described Jordan in your early days he is finding it difficult to accept something which has changed his life, and still talks about wanting to go travelling when he is able to.
As parents we feel helpless and unable to help when he is bedridden after lumber punctures to check the pressure level which seems to be the only way to check it as far a we can see at his hospital.
My question is what exactly is the diagnosis hydrocephalus? . His ICP was due to fluid not being able to drain as per your definition but nowhere on his discharge notes does it mention it and I am confused.
The hospital is very vague to be honest with information and haven’t even told him the make or type of VP shunt he has or any information what he can and can’t do with a shunt
Does anyone else have similar experience with neuro centres?
Has anyone been allowed to travel worldwide for holidays or work?
Hi, thank you for your kind compliment and sorry it’s taken me so long to reply. Things have been busy! I’m sorry to hear your son is going through it. It sounds a very similar situation to mine when I was first diagnosed (I was 26 and it came out of the blue). To have no known cause for it is a bit frustrating as it does make things feel , as you put it, a little ‘vague’. I am a firm believer in knowledge meaning power in these situations. Your son needs to know about his shunt; what type it is, why they chose that one, what he may have to avoid in the future and so on. It’s important. When I left the hospital with my first shunt, they didn’t even tell me it could block or get infected! And of course, ten days later, it blocked completely. I knew I felt really bad but it didn’t occur to me it might be that. I thought I was just having a really bad day. So when it got really bad, instead of phoning for an ambulance or getting straight to A&E (which I should have done), I went to bed, hoping I’d feel better when I woke up. I’m lucky that I did actually wake up! The pressure of being flat blew out the blockage and I woke up, covered in vomit (disgusting, sorry but true) with the room spinning as the pressure in my head plummeted back down. Awful experience. After that I went straight back to my surgeon and demanded information! It’s good to have a chat – just a chat – with the team who are treating your son as it reassures you and forms a good relationship on both sides, which is really important when dealing with hydrocephalus. I’d go with a notepad if I were you, write down some questions and make sure you get the info you need. His surgeon should have a good idea of what your son can do (probably avoid contact sports, don’t scuba dive, maybe try a short haul flight first to see how he manages it) and so on. If he’s not very pressure sensitive, he may be pretty unaffected by his shunt! I’d tell him to watch the drinking side of things….hangovers with hydrocephalus are literally a living Hell. They’re the reason I barely drink now. Also, maybe try joining a support group, where you can find other parents going through exactly the same thing as you. I don’t know where you live but if you’re in the UK, a good one is Hydros Unite UK on Facebook…it’s friendly, informative and supportive. And I’m an admin of it so it’s an unashamed plug, lol! Anyway, best of luck to you both and go have that chat. You’ll feel better for having info, I promise! Jordan xx
I just want to update since my last comment in September last year. My son had his VP shunt replaced with a LP shunt and initially the hospital didn’t put a valve in to regulate the CF flow. I had read almost everything I could find about his condition, and a professor in USA insisted that a valve should be inserted with a LP shunt.
You advised about speaking to surgeons and after my son was in extreme pain due to low pressure headaches and unable to stand,, I insisted that the surgeon insert a regulator valve, and they put in a programmable one.
That was December 2014 and I am pleased to say that at the moment he is back to normal. At his lowest point of illness he thought he life would be spent laid up in bed for ever, and I just want to let everyone know on this blog that things can get better. He is currently having a fantastic time in Australia travelling with friends only 3 months after being in hospital and doing what a 22 year old should do. Obviously, he is being careful and taken medical notes and insurance precautions with him just in case. But his neurosurgeon and neurologist told him to enjoy life as much as possible when the shunt is working and it is fantastic to see that he is able to.
Hi, that’s fantastic news!! I know I start to sound like a stuck record when I keep banging on about speaking to our surgeons, but there is a valid reason! I’m so pleased he’s feeling better. I know all too well the feeling (and fear) of ‘is this it?’ when the head pressure is really bad; you just can’t remember what feeling well feels like. But that stage always passes. Please pass my good wishes onto your son…I gather he had no problems with flying? X
ty for thisxx
You’re very welcome! x
Hi Jordan! I’m so thankful for your blog, as all I was getting on the internet was nothing but textbook type facts and studies, it’s really nice to from someone who actually has this condition. My mom has been diagnosed with hydrocephalus last year, she is 69 and her ventricles are enormous! Her neurosurgeon said he knows for a fact that she’s had this her whole life but she never had a CAT scan or MRI of her head before so she never knew until she started having falls and the shuffled walk and memory loss and incontinence that normally occurs in older people with this condition. I do believe that this has been a lifelong condition because my mom has always walked slower than everyone and was never athletic and never learned how to drive a car and always had bad time management. She was however very smart in many other ways and had a great vocabulary which she still has but boy has she been dwindling. I notice that I have to help her get dressed now and when she eats she gets her food all over herself. She does everything in slow motion. Her memory is awful but yet I can still have a great conversation with her. She had an endoscopic third ventricular surgery last August and it really didn’t improve her much, her incontinence and memory and walk has gotten worse and she started falling again after a year and according to another CAT scan she still has huge ventricles. This is due to her “compensated hydrocephalus” her brain has been making room for all this spinal fluid over the years but now it can no longer expand. She is in the hospital now and we are deciding if we should just go for a shunt, the surgeon did a lumbar drainage that lasted about 6 days….she seems a bit clearer and her headaches seem to be gone but the nurses and doctor isn’t really convinced that she improved much from it so they are hesitant about shunting her and the surgeon is basically leaving it up to me and my dad…he thinks it may improve her slightly in the long run but of course there’s always those risks involved of infection and over drainage (he did say he can put an extra valve on it to prevent over drainage from occurring). I don’t want to put my poor mom through another surgery but what else can I do? I’m afraid if I don’t use my last option then I will never know if it will help her and if I don’t get her shunted she is only going to get worse. What do you think? To shunt or not to shunt? Thanks for listening!
I’m so sorry it’s taken me almost a month to reply; it’s been very busy and I’ve not had time to really sit down and go through all the messages on this blog. I suppose by now your Mum has either had the shunt or gone home? I’d be interested to know which decision you made. I really felt for you whilst reading your post, because I could hear how helpless you feel. What did leap out at me, however, was how your Mum felt better (even if temporarily) after the lumbar puncture. One of those wouldn’t make a massive difference as the fluid just builds up again but a shunt would be draining all the time (well, when it’s needed) so the improvement would probably gradually strengthen over time as well. If you get to read this, do let me know what happened and I wish you all the very best. Jordan xx
Hey everyone, My names Haydn and i am 22 years old, i have had a shunt since birth,when i was younger i used to have ops to have decompression’s done to relieve pressure on my brain, this article is amazing Jordan, lastnight my shunt was really sore from 2pm onwards, i took medicene to ease the pain but it still was sore, so i started to lie down and the pain got less sorer then sitting up, i read here that people with shunts suffer headaches and pain etc. from the pressure in the weather,
Great to hear from you. How is your head now? If you find that you’re always more comfortable lying down, it could be that your pressure is a little on the low side. Do you have a programmable shunt? If so, it might be worth considering going up a notch if it persists. Yes, weather really can affect us! Especially around the turn of the seasons. So if you’re feeling more ropey these days, it could be the change from Summer to Autumn and you may find it eases in a few weeks…if you can wait that long, that is! Hope you feel better soon. Jordan xx
Greetings Jordan! Cool blog!. I have a few years on you as I am 53 and had my first shunt placed in 1960 and am on my 23rd VP. Won’t get near the programmables
I have what us called communicating hydrocephalus since birth. I can relate to having several shunt revisions, because I was born two months premature, and had a stroke at the age of six weeks, and that’s when the shunting started. I had 20 revisions in three years. The type of shunt I have in my right side I think is shunt called an amp. On my left side have an vp shunt. I have been quite fortunate that since the last revision on my right side I haven’t had any more. Since the shunt was put into my left side I only had one. I can very much so relate to what other people have been saying about effects on them because of weather and doing too much before bed or through out the day. One thing I do have as well is am seizure disorder that can make things a little more complicated. I can also relate to what happens when the seasons changes.
Hi David, thanks for getting in touch! I keep meaning to do a piece on the different forms of hydro and you’ve just reminded me so double thanks. Twenty revisions in three years is a real onslaught so I’m glad to hear that’s been it for a while. I’ve not heard of an amp shunt though! Learn something new every day from the blog readers. I hope you continue to do well as far as absence of revisions goes. Best wishes to you! Jordan x
Thanks for this Jordan it was a good read! I had two brain surgeries just this past month, one was a fenestration of my arachnoix cyst, and when that didnt work i had a shunt put it.. They cyst is 5inches by 2.5 wide! So pretty big. Im glad to know that you and others could hear a buzzing like sound too! Sometimes mine is a buzzing/ringing noise.. Also since my second surgery ive had sharp stabbing pain in my abodomen and ive been going around and around with doctors on what it could be.. 2 xrays, 2 ultra sounds and 1 CT scan! And they say it could be the tubing and it maybe isnt that.. I just wish they could make up their mind on what they want to do! Any way thank you so much for this more indepth about somethings when having a shunt! I hope all is well with you 🙂
Ah, the stabbing pains…such a joy…NOT! The problem with those is that the best way to detect what is causing them is to have an ultrasound and of course you have to be in hospital whilst they’re going on in order to get one, which, timing-wise, is pretty near-impossible to manage. I ended up in A&E three times with my pains as as they became so bad I literally collapsed with them so I would urge you to get answers if you can, just so you can become pain-free. If it continues, go to your surgeon. Mine was able to give me some pain killers which did work until my shunt revision (which was due anyway) and once the tube in the abdomen was removed, hey presto! No more pain! You can definitely get help for it if it’s bad but you may well find that you have to ‘nudge’ them! Good luck though. At the moment things are kind of okay with me, thank you. Tired some days, headachey some days, able to go for a run on others and get on with my work…so pretty normal really! Have a great Christmas. Jordan x
Thank you for this. I keep forgetting (due to short term memory issues of course) to ask doctors about the gurgling. Have had a programable Codman Hakim since April and didn’t notice the sound/feeling til I got sick so I was a little concerned but this article has put that fear to rest at least.
I’m glad it’s eased your mind a bit! The gurgling freaked me out the first time I heard it so I know where you’re coming from. Never be afraid to ask (if you do remember to!!) as it’s so important to build that relationship and communication with your medical team; the better they know you, the better they can treat you. Jordan x
hello I have read your article but I would like to ask a question if you happen to know the answer I have done the surgery 6 months ago but recently I were under stress at work and I kinda was sick any way I slept for 3 days and I was eating Mama said what kept me ok and even I talked to mum in those 3 days but the mystery is I couldn’t remember a thing in those 3 days as even i WASN’T ME after I woked up I remember that I was sleeping only but not for 3 days . I only slept for 1 day that ‘s all I remember anyway I was shocked but they kept telling me things I have made and I remember nothing. is this because of the shunt and a few days before that incident I hit my head a big hit near the shunt but I was ok after a while . any answer Iplease will be helpful because anyway I was gonna to do MRI scan but this forgetting incident is it because of the shunt or what ???
because it is the first I have been through this. Thankssssssssssss in advanceeeeee
I’m sorry for the late reply….it’s been such a long time since you posted your question and I’m hoping that by now your episode has resolved itself. If this is your first shunt, a virus or even a heavy cold can have quite an effect on your symptoms. I get really quite unwell when I get colds! My short-term memory is fairly bad (I have to write lists all the time for everything!!) but my longer term memory is better. However, there have been a few times when friends or family have been talking about events which I was present at and I have no recollection of them whatsoever! It’s as though someone had come along and erased that event from my memory entirely. This hasn’t happened a lot – I can count the amount of times on one hand – but it has happened. I cannot say for sure whether your memory issues are directly related to the shunt or if you just had a bad virus which exacerbated any minor memory issues or if it’s completely unrelated, but it could have some link so it’s best to speak to your neurosurgeon (or call his/her secretary) about this. I know memory can be affected; I’ve had 20 brain surgeries so I kind of expect there to be a few memory issues here and there, but if you hit your head and you’re worried, it’s always best to speak to the person who is looking after you medically! Sorry for the delay again and I do hope everything rights itself soon. Jordan x
Oh my goodness. How great it is to find a place to talk to people who know what I’m going through. I’ve had a shunt for 30 years, revised twice. I just recently had a new one put in about 3 months ago and I just noticed a few days ago there is a hard white knot looking thing on my head where my shunt is. I’m wondering if my shunt is coming out of my skin. Is that even possible?
Firstly, I’m so sorry for the mahoosive delay in replying to you; it’s been rather a busy January, work-wise, to say the least! Regarding the white knot thing…it may well be a stitch which is coming out; I’ve had that happen twice to me. Just stitches from inside which somehow try to find their way out of the body. I went to my doctor and he removed it both times. I would doubt that the shunt is coming out of your head but it is a foreign body and the body itself can try to reject those from time to time so if I were you (if you haven’t already done so), I would get down to your doctor fairly soon so he/she can have a look. The shunt itself will run through a fairly snug burr hole in the skull as well as going right through the brain matter, so that’s why I would seriously doubt it’s the shunt. If your head is feeling okay pressure-wise, that will be a good tell-tale sign too! Good luck and do let me know what the outcome is, ‘cos I’m curious!! 🙂 Jordan x
I have a shunt and have been feeling tired and weak sometimes out of the day I,m really tired then usual I know itsmy shunt melfuntioning iI always have to wait until my surgeon finally figures out I know the systems I have had 3 surgerys in the last 6 years I,m tired its hard on my kids well there’s nothing I can do but live with it thank u all this is helpful and I don’t feel alone with this shunt
Sorry to hear you’re having a hard time with it lately…but then it is hard to live with sometimes! Tiredness is a huge factor with me; I have to really work hard to keep myself very active (I can’t live without exercise but my God it’s hard to do it sometimes!). You seem pretty certain it’s shunt-related and I hope you get it sorted soon. Do always bear in mind that if it gets to the point where you feel unsatisfied with a surgeon, you can always seek a second opinion. That’s a bit of worse-case scenario and maybe you’re happy with yours but I do get a lot of messages from people not happy with their surgeons but not really certain of what to do about it. Don’t suffer if you can get more prompt care elsewhere! Really hope you feel better soon. Jordan x
Hi, I was wondering, how did you deal with all the headaches?
Hi, for some reason I’ve only just seen this! Many apologies. Headache-wise, I rarely take painkillers. They do nothing. I have a headache permanently so I prefer to use the non-medical methods of helping pain. I swear by exercise. It hurts even more when I actually do it, but day-to-day it keeps the rest of body functioning well which seems to really help with pain. I notice the difference if for some reason I cannot exercise. Must be the increased oxygen levels! I also need sleep. I don’t get that much as I’ve always had trouble sleeping but if I get less than 5 hours I feel terrible the day after: my brain pretty much stops functioning and hurts a lot. I avoid all caffeine as it hurts my head…same with very spicy food. If my pressure is playing up, I use those cold stick-on pads which you out on your forehead. After any surgery, I stick them all over my head, along with an ice-pack! Ice really, really helps reduce pain for me. Apart from those things, I’ve learned that managing your day-to-day life can work wonders. I get worse headaches in the evening so I don’t tend to go out then: I do my socialising in the day at weekends. I can’t work loads (I tried a few times and always landed up in hospital!) so now I only work to my limit and that’s it. And I never do anything other than work on that day..I can’t socialise as well before I start my shift or I overdo it. By being very cautious with what I do each day, I’ve managed to stay out of hospital for 20 months, which is an all-time record for me! So clearly it’s working. It takes time to find what works for you and a lot of trial and error but once you start to identify patterns and triggers, you can start to take control and make changes to get things better.Jordan x
Thank you so much for this!! I’ve been feeling so alone having had 2 shunts inserted in the last 2 years and needing another revision. My neurosurgeon is very capable in the theatre but not so good when it comes to actually answering questions and hearing my concerns.
Hi Kendall, you’re very welcome; if this blog helps some people then that’s great. I don’t know where you’re based but do always bear in mind that you can always seek a second – or third – opinion. Mr Watkins is my third surgeon. Not saying the other two were bad, but I felt like you; not listened to (which erodes trust over time). Never be afraid to go to your GP and ask for a referral if you’re not confident in the team treating you because with hydrocephalus, it’s imperative to have a good relationship with your surgeon and medical team. All the best, Jordan. X
Hey all. I am 18 years old and I’ve had my shunt since birth. Wince then I’ve had a whopping 17 revisions. I really never worried or even thought about my shunt until about a year ago. There’s a couple things I’ve been noticing lately that I haven’t noticed before. When I turn my sometimes the tube party feelings like its being pulled & my shunt its self sometimes feels like its having pressure put on to it. Is this normal? Also I’ve had the same neurosurgeron for all 18 of my surgeries at Vancouver children’s hospital. I know am older and will be getting a new one if and when i need too. Anyone in kelowna have any good words about their neurosurgeon as I’m worried he’s not my one I’ve always had lol. Thanks for the info.
Hi Taryn, sorry for the very late reply. Yep, my tubing feels pulled and tight sometimes..like it’s being stretched. I have no idea why this happens! As long as your shunt path doesn’t become red or raised (they’re signs of infection), it may be that the tubing -and there’s rather a lot of it – has been caught a bit. As to the shunt valve itself, it can feel ‘pressured’ If fluid builds up in it but then if that was happening and it wasn’t draining properly,your head would CERTAINLY know about it! Keep an eye on it and if you’re worried, always, always speak to your surgeon! Keep those lines of communication with him/her OPEN! It’s their job to hear your concerns as well as perform surgery on you do don’t worry about sharing what’s troubling you regarding your shunt with them. It may well be nothing to worry about but if it IS a problem, they need to know and the sooner the better. Best wishes to you, Jordan x
Hello Jordan! I have had my shunt for 6 months and i,ve started to experience buzzing which is getting worse.Does this mean that i may require more surgery as its becoming a real problem? What are your thoughts? Thankyou Jordan,i,m in England by the way and have looked at your site many times now and its a good one!
I am New to this forum. My Son had VP Shunt when he was 2 months old. he is now 11 months, but there is no neck control for him till now. He is able to move his head from side to side, but can not hold it when we lift him from sleeping position to siting position. We have started Physiotherapy at home for him (One Dr comes home for one hour daily). But still no neck control for him. Can someone please advice? We are too much worried for him now.
Hi m in same situation as u were years ago.. please tell me hows everything going on qith hr child.. in how many mnth he achieved this milestone.. mean holding his neck .. m v v worried for ny baby
I’ve been reading your blog and first of all I’d like to thank you for it. I think a lot of people like me with a shunt appreciate it.
You write that you have suffered from stabbing pain caused by the shunt. I also feel this pain and I’m looking for advise.
Since two and a half month, I have got a VP shunt (my first one ever). Unfortunately, since then I have been suffering from a stabbing pain in my abdomen. One day it hurts me on the left side in my belly and radiates to my left shoulder, the other day the same thing at the right sinde and after a while I feel the same pain at the very bottom. The pain circulates. Not a day goes by that I’m pain free. Also I vomit quite often, this goes with dizzines and sometimes headache. It is terrible and it now frustrates me enormously. Especially because it takes so long and it doesn’t reduce. My blood tests are normal. It seems the shunt is working fine, because my my papilledema is as good as gone and the scan of my head shows everything is fine with my ventricles.
My neurosurgeon sent me to various specialists to examine where the abdominal pain is coming from. It now appears that there is nothing wrong with my organs but that the VP shunt is irritating my peritoneum. If the pain isn’t less or gone within two weeks my neurosurgeon wants to take the tubing out of my belly and put new tubing to the pleural cavity. So the tubing will be near thw lungs. (Change the VP shunt to a VPL shunt.) I wonder if I should do surgery again. Should I wait a bit longer to see if the stabbing pain will resolve without surgery? And I also wonder if I will feel the same pain in my chest if I’ll have a VPL shunt. How long did you had this stabbing pain? How long did it take for it to go away?
I’m sorry if my story is a bit long. 🙂 Advice and tips are welcome!
Hi everyone. I got my shunt about a year ago. I think the benefits outway the my problems with hydrocephalus. They said I had twice the hormal pressure in my head. It was causing seizures. I appearantly had it my whole life and never knew. Also found out that I had a arachnoid cyst. The biggest my neuro sugeon ever saw. Anyhoo, since the surgery, no seizures. I feel awake compared to before. So, I guess it’s working.
It tickles behing the ear. It kinda feels numb at the same time. I can’t feel it in my belly. The pump/ valve has moved from the top of my head to the side. When I lay down with the shunt toward the pillow, I hear it ticking.
My daughter is wanting to make a working model of a shunt with an explanation of how it works for a science fair project. Any ideas?? Any websites that might help??
Hi I put into Google living with a shunt after surgery and your blog came up…..my 10 month old (turned 1 on 30th march)was diagnosed with a brain tumour on 18th February …it is the size of a tangerine big for a baby..they said it has been growing for a long time maybe even when in the womb…the blood flow to it and in it is severe..she has had 2 lots of chemo to reduce blood flow. The 1st lot helped so hopefully 2nd wudav done some more good…”if” she survives ,sorry WHEN she’s had the operation she will most probably have to have a shunt coz even without the tumor that part of the brain will still produpce too much “brain juice” as our 3 yr old calls it….I’m worried that I’m not going to know when she’s in pain etc so reading you’re blog has helped thankyou…x
This is the first time that I have read about exactly what I am feeling in my abdomen 3 months post shunt. None of my doctors believed it. Sometimes I can push on my belly and move the end of the shunt around and it starts to drain again and my head clears up.
Hey all! Anyone ever have a cyst like “thing” going on right by the abdominal scar of a vp shunt?
Thank you so much for this post! My daughter was born with a malignant immature teratoma in her brain as well as hydrocephalus. She got her first permanent shunt last November. All has been well with the shunt so far, but she occasionally will feel of the tubing or scratch at it. It’s nice to be able to read what it feels like to have one. She is 19 months now and can’t tell me how she feels. Thanks again!
When I was 21 I was diagnosed with an inoperable brain tumor. I felt so alone and scared because I had never met anyone else who had one or even knew what a shunt was. It was a pretty horrific recovery. I’m soon to be 32 and still have my original shunt. With every lingering headache I’m always on the edge of my seat hoping that my shunt isn’t the cause.
It’s nice to meet others! I really needed to read this 🙂
Hey Ashleigh! Sorry for the late reply. I’m glad the post helped somewhat. These shunts…lifesavers on one hand and pesky on the other! I hope you’re doing well at the moment. Jordan x
Just got home following shunt surgery for nph. My initial symptoms, primarily gait related, are resolved at tis point How it will be long term only time will tell. I was a Ph.D. in clinicial psychology but retired 2 years ago. A year before that was when the gait issue became a dominant disability.
Since I had the procedure I have been extremely influenced by change in temp. I will obviously give this a little more time. See the neurosurgeon in week. Are the temp change issues you mention sourced internally, externally or both. I seem to be really influenced by external trends. Also feels like a small infection. The tube??? Good luck to all of you. Venting helps even if no resolution are found. BUT!!!!! I always want answers.
ps. Sorry for any errors, still weak.
The temperature changes I refer to are external. I get affected by the weather and I know many shunted people also do. We have bad thunderstorms on the way here tomorrow and I’m not looking forward to it! If you’re feeling under the weather a bit (pardon the pun) I’d say that’s normal so soon after a big surgery. You need at least 6-8 weeks to recover properly from a surgery like that so give things time. Hope the meeting with your surgeon went well. Jordan x
Wow. This is a great read. I was just diagnosed with Hydrocephalus at 24, and I have to have a shunt placed. I’m horrified. To be honest. This really does make me feel much more at ease to know what the possibilities can be. Thank you!
I feel for you! I was diagnosed at 26 and equally horrified! I’ve had 20 surgeries now and I have to say that the first was not so easy. You’ll be fine but you may feel like utter shite for the first few days! The first one is sometimes the hardest as your brain is being asked to make room for a new structure and it may not like it! Take all the pain relief you can and REST. Don’t be in a rush to get up and do stuff. The good side is that your hydrocephalus symptoms should soon start to ease and you can return to some much-desired normalcy! Best of luck with it. And enjoy your new funky hairdo! 🙂 Jordan x
Most of your experiences appear similar to mine. My shunt was inserted at 3 months and bar one or two instances was unnoticable till the tube disintegrated at 19. Now I have a magnetically controlled shunt (doctors said nothing, shine sorted me to-after I flew from east midlands airport, well deserved reputation for changing them). Since my revision I have found my head and shunt is always rare, when ever they test it out doesn’t work as it should. Only advice I would give is find a hospital with hydrocephalus unit, I was treated in a general Neuro unit and treatment lead to lots of problems including memory damage. Hydrocephalus units at Nottingham and Southampton have been great (when I mentioned one of the techniques from Newcastle the doctor said witchcraft)
Thanks for your comments. Witchcraft??! That’s a first! I agree about finding the right treatment team and centre. Given that we need to act fairly quickly when a shunt fails, it does make things a whole lot easier if you don’t have to start moving from hospital to hospital. I’m glad you’re happy with who you see, especially if you’re a more complex case too! Jordan
my son is 1year 3month living with a shunt since.she is playing stil struggling to walk trying to talk,u can’t even notice he is on shunt, I’m the one who’s stil struggling emotionaly not excepting the situation but otherwise he is a happy child who like to dance.
Aww , he sounds a lovely little chap! Don’t be too hard on yourself; it’s a huge life adjustment for both of you and may take a couple of years to really get your head around it and realise what it’s going to involve. Take each day as it comes and bear in mind that it really is possible to lead a relatively normal life. All the very best to you both! Jordan x
Hi my name is Kiki. I am 13yrs, and I had my shunt since 3mos. I was a preemie and had hydrocephalus just like youJjordan. Thank you for doing this blog it really helped me. I also had the stabbing pain that you explained about twice. I too have had the ringing it is very annoying.
Hi Kiki (very exotic name!),
I’m glad you’ve found the blog helpful…I hope you’re not still having the stabbing pains as they’re horrible! Are you able to lead a relatively normal life? Just avoid the parachute jumps and scuba diving!!
Karrina/Kiki I take something called Buscopan for the sharp pains inside the abdomen (primarily around the bladder for me) if that is what you are experiencing from the CSF in the abdomen aggravating the organs, those tablets cure the pain for me without the need for any painkillers.
This is really nice and the most useful and informational post I have come across. My Son had Shunt placed when he was 2 months old (born 2 months Premature). We had Twins (Boy, Girl). Now they are 1 year old. Girl (Tanya) started walking (actually running) now. But the Boy (Tanay) with the shunt, still does not have neck control. He sleeps during the day (mostly) and is awake during night. He occasionally smiles and makes noise. Has anyone else also faced similar situations? Delayed development possibly connected with Hydrocephalus + Shunt ?
I’m sorry, for some reason I’ve only just seen your message so I’ve published it now and hopefully someone may help. I can’t really comment as I have limited knowledge of children with shunts, being diagnosed as an adult myself. Your best bet is indeed to ask other parents of shunted children. I hope you get an answer soon. All the best, Jordan
Really puts my husbands shunt issues into perspective. Love the feeling of humour too. Relays a feeling of positive mental attitude.
That’s what I tell myself! I’ve seen fellow patients waaaaaaaaaay worse than me so I always count my blessings. I don’t always feel positive (the shunt infections were a right old test of positive mental attitude!!) but to my mind you can’t change the situation so you may as well try and make the best of it. If I feel like having a right old whinge, I tend to have it in my head. Or I tell my cat. 🙂 . All the best, Jordan.
How did you know you had an infection?what are the symptoms??I ve got some strange symptoms lately.
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
Thank you.Very helpfully.??
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
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
When can the shunt be removed if ever?
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.
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…..
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
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
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
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
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
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.
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!
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.
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
Anybody out there really mind The cold when they’re Shuntwas not working properly
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
I didn’t find this website until just now, (2 years later?) so I’m a little late in commenting. Sorry about that!
I’ve had my shunt for the last 38 years, and I dread Winter!
I used to joke about the shunt “freezing,” because it will do just that–quit working–if I’m exposed to extreme cold, for long periods of time.
I have had to sit for half an hour, with my hand over the valve in my head, to “warm it up,” which takes half an hour.
The first time this happened was very alarming, because nobody told me this might happen.
After getting back indoors, and the shunt is “warming up,” there is a bit of discomfort for half an hour, and I’ve found a warm towel “fresh out of the dryer,” folded and placed over the shunt valve in the head, and along my neck for ten minutes, helps to warm it up. In that ten minutes, (sitting quietly–not moving around) I have thawed out sufficiently from the outdoors, and there’s little to no discomfort. Just remember: heat kills pain. I hope this helps.
Wow, never heard of that one before! I’m guessing this may be a thing with older shunts as I’ve never known anyone have to ‘thaw out’ their shunt valve to get it working again! That’s quite fascinating – thank goodness you worked out how to do it. It’s changes in barometric pressure which give my head grief – like now, with a big new pressure front coming in…I’m feeling that one! I don’t get on with Summer at all because of the storms, humidity and heat; I fare much better in the Winter although that’s never perfect. Thanks for sharing – very interesting! Jordan x
hi johnson, during this long time having shunt, did you frequently suffer any kind of illness and was that only one time surgery that still working?
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.
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.
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.
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.
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.
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
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.
Sorry for the huge delay in getting your comment published. Did you find out your wife getting along? Jordan
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.
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
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.
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
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.
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
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!
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
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?
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
Thank you for writing this. I have a Codman vp shunt it was placed in July 2016.
You’re welcome Debbie. I hope you’re doing well with it? Jordan
I also have a codeman shunt. mine is an hakim programmable. so far (3 weeks since being shunted) so good. Two weeks prior to being shunted, I had brain surgery to remove a tumour. Then I developed hydrocephalus and needed a shunt. I have been doing a lot of reading. I see some fair well in flying. I hope I do
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!!
Thanks so much. How is your sister? Did she have the shunt fitted? If so how is she finding it? Jordan x
I have experienced the stabbing pains a lot!! Years after the surgery, and more recently so have been given morphine to relieve pain when at home.
I definitely experience sensitivity to weather for sure, more so in heavy rain.
Not had any infection thankfully.
Over and under draining is frequent depending on time of the month.
Loved reading this blog, reassured me to know I’m not going mad with the stabbing pains being related to the vp shunt.
I’m glad to know the blog may be helping. Yes the stabbing pains can be awful. I don’t have them any more (knock on wood!) since I had my last surgery which moved the tubing out of the way but I do remember when I did have them; I ended up in A&E a few times. If they get really bad it may be worth discussing the option of moving the tubing or shortening it a little with your surgeon. Best wishes, Jordan x
So I have had my shunt for almost 16 year, and had no problem, but very recently I’ve been noticing a slight buzzing sensation near the valve of the straw. It’s a very recent feeling. So when I read that you had a buzzing sound in you head, that calmed my concern. Should I be worried about it? It’s not painful but it’s, like you said, not preferred.
Hi Alyson, it’s always worth addressing any worries you have with your neurosurgeon but I would guess this is just your valve working! In my experience, any real problem with the shunt itself soon makes you feel unwell, whether it’s overdraining, underdraining or infected. So chances are if you feel fine, it’s not too much to worry about. But always check if you’re not sure, if only for your peace of mind. Jordan x
I caught a cold and been caughing alot and now I have ringing in my right ear,my shunt is four inches above my right ear.I felt a warm glob coming down the back of my throat and I spit in a cup and it was a big glob of blood , and my right ear will not stop ringing , will I be OK?
Hi Jeffrey, Sorry to hear you’re not well. I think the best thing to do is to get to your doctor (if you haven’t already) and get checked over. I do find that my tinnitus gets worse if I am unwell but whether your symptoms are directly connected to your shunt I could not say. Get to the docs and I hope you feel better soon! Jordan
Hiya , My shunt has been tied off for way over a year. For the last 7 months ive had soreness around my valve and a few inches around it. It hurts to touch , raise my eyebrows, sneeze any movement above the eyes makes it so sore – almost like my scalp is going to break open. Ice cold feeling. I no longer need this shunt- I have headaches nothing serious though. Nothing to suggest my original condition is coming back. I am seeing my neuro surgeon this week but I would like to see if anyone has experienced this and if so what was the outcome. I don’t want to be fobbed off by the consultant with tablets and all that. This is affecting my social life and work life. Any advice or experience would be much appreciated.
My daughter is having long hours of headache’s that go on for a few days ,she has severe learning difficulties so has a job to explain herself , she said it feels like her eyes are going to pop out of her head the pain is across the front of the forehead,which she describes as a shunt headache. Last year she had an anti siphon device fitted to both shunt’s because of low pressure headache’s, but the headache’s she’s describing are the same as the low pressure headache’s, can you give me any explanation? Thanks
I was so happy to come across your blog! Well written.
I got my VP shunt placed in September 2018 and have definitely experienced some of the symptoms you described.
The stubbing was a nightmare! I uses to feel it all the time but these days just very randomly.
I think it is a clever idea to keep a journal what kind of weather/ season it is, or if coffee helps with some headdaches ( have had a few since the surgery. Was surprised as I didn’t expect to have them any more. Luckily, they were nowhere close to the kind of headaches I had before the sx).
Thank you for sharing tour story and ideas!
Sorry for the late reply. Hope you’re still doing well? Jordan x
Our daughter was born extremely premature at 24 weeks and she has had a rough road in this first year of her life but getting better. She has hydrocephalus and has had 3 shunt surgeries so far. There is no support groups or blogs I could find and also not much information here in New Zealand. Because she is so little it is hard for us to judge sometimes if she might have a problem with the shunt or if she just doing baby stuff like teething. Anyway I try to read as much as possible about it and started wondering how life will be for her, like will she be able to do normal kids stuff or should I get her a helmet to go to the playground when that time comes… In order to get more information and bring families together, share experiences even, we are starting a charity for hydrocephalus and I was wondering if I can share parts of this article you wrote on our website. We will launch it on 26/04, our daughter’s first birthday. Congratulations on your blog, it is a lot of information and you have a positive and unique approach, being direct, honest but with humur too.
Sorry for being so late in getting back. I’m going through a backlog of messages I wasn’t able to answer earlier this year. Sounds like a really positive thing to do and yes, you can share whatever you like. I think once you start reaching out, you’ll be surprised by the amount of people in a similar situation to you. Good luck to you all. Jordan x
My son revived his VP shunt soon after he was born. I’m very curious of what he might be going through that is his everyday norm to him. He has never known a life without it. Please fill me in if you can.
Everyone is different and as I was shunted at the age of 24, I don’t have the experience of having had a shunt from birth so it’s difficult to say. There are a lot of comments after many of the posts I’ve written on here from people who live with shunts so it may be worth having a read-through of some of those. Also, where do you live? If you’re in the UK, Shine Charity is a good resource to get information from. They have sections specifically for parents of shunted children. Go to: http://www.shinecharity.org.uk. Jordan x
My name is James Carter and I’m from the U.S. (dont hold that against me please… We’re not all crazy nowadays) ive had my shunt since I was 3 days old and I’m 43 now. I guess I have been lucky in my life because only 3 or 4 times has it ever really let me know it was there and those are times when I would turn my head quickly and I could feel the tube in my neck pull. It never hurts in my head or my stomach. So I don’t know if I was amazingly lucky or what. It’s only really affected me twice in my life once they wouldn’t let me play football (American football ) and they wouldn’t let me go in the Navy.
So I would say that if your son doesn’t complain about it then everything’s okay…. they might not let him play soccer…sorry it’s football there…but that’s about it…
P.s. just tell him to watch it and don’t bang your head into anything cuz it hurts like hell when you bang it into something!
Very useful and informative. Thanks Jordan
You’re welcome! 🙂
Thank you for sharing your experience with hydrocephalus. I’m a patient as well and can relate to much of what you described. Luckily, I haven’t had any complications yet (I have aqueductal stenosis, surgery was on 1/18/18).
Misery is best shared with those who like fated and like minded fellow human beings.
I’m hoping to read more helpful posts on your site.
My baby was diagnosed with congenital monolateral hydrocephaly. He was born in Italy but I live in Sutton with my wife. He is now 3 weeks old and we are still waiting the doctors to have a decision on what would be his treatment, wether the shunt or septostomy.
When all this storm passes we will return to London. Would you happen to know a good place/hospital/doctor that could follow him there?
Also, is there any particular website or blog that you would recommend?
Many thanks in advance
My apologies for the delay in replying to you. I’m sorry to hear your little boy is going through this; must be a worrying time for you all. I think if you are in London then the place I would head to would be Great Ormond Street Children’s Hospital. However, once you have a GP in London they’ll probably be able to sort a referral out for you so I’d go there first! As for websites and blogs – well the reason I started this one was because I couldn’t find much in the way of personal information and advice about hydrocephalus and to be honest even now I struggle to find many! Shine UK is the UK charity for Hydrocephalus and they are good at pointing people in the right direction; I’m not a parent of a child with hydrocephalus but they may be able to give you some more specific advice there. Best of luck to you all. Jordan x
Hello and thank you all for the wealth of information and support. I was shunted 3 weeks ago; colloid cyst on the 3rd ventricle was only partially removed in 2017 and obstructive hydro became serious. Very helpful to learn that the tummy pains which make me cry out are normal! I’m starting to regain interest in life and returning to piano is helpful (I’m a professional pianist). Depression feels not very far away though! Did anyone else experience low mood adjusting to their life-saving silicone?
Thanks and ethereal hugs to all.
Thanks for your message and I hope you’re starting to feel a bit better by now. Although the stomach pains are possibly shunt-related, it may be worth getting them checked out with your doctor to make sure it’s not anything else. And shunt tubing can be shortened/moved if it becomes very bad; keep talking to your neurosurgeon if it gets really troublesome. I think that feeling low sometimes is part and parcel of living with a condition like this; also general anaesthetics can bring on the post-surgery blues (some are more susceptible to this than others). It’s a scary thing to go through so it’s no surprise you may be feeling down. Look after yourself and see how you go – don’t feel you can’t talk to your doctor about this if it’s still carrying on (in fact it’s important that he or she knows this is going on in addition to your physical situation). Best of luck to you. Jordan x
Firstly, thank you so much for your blog.
In a world of “ooh that’s not connected to your hydro” I now feel more confident in some of the symptoms I have and that I am not losing my marbles.
Every now and again I get immense lower stomach pain, like period pain but much worse. I now know that I am not alone with this. I have since learned that it’s worth taking laxatives for a couple of days as you bowel can become inflamed and pushes out your tube.
I does help for me, sometimes.
Also the buzzing, I was told that it was tinnitus but I never believed it. I have suspected it’s my Shunt the whole time.
Thank you so much for all that you write I keep your page open and very often refer to it or just read it for the hellofit.
Much love, fellow hydrophant