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.