**03 September update: I’ve been asked a couple of times recently about shunt malfunction symptoms so I’ve just posted the answer I gave to a recent letter below as the first question/answer under ‘shunt worries’ (with a few more bits of info!).**
*February Update* I have received a lot of emails overnight regarding this post (all good!)…it seems many of you are finding it useful. I’ve also had some more questions so I shall keep this post up and update it as more relevant questions come in. Also, many of you are sharing amazing things in the comments section of each post, so if you want to make contact with others in the same situation as you, have a read through then and maybe reach out if you feel so inclined! This is a place for sharing and hopefully for putting people in touch too!
You sent in a whole bunch of questions; some about lifestyle, some about surgeries, lots about strange feelings and ‘is this normal?’ concerns. I’m so sorry it’s taken till the beginning of June to answer them all. Things have been very busy on the Shunt Donation Project-front (which actually has developed into so much more than just shunt donation) and I shall update this in a separate post next week. As I got so many questions, many were repeated so I have divided the questions and answers into categories so you can hopefully find the answers you need quickly rather than scrolling through a sea of mixed-up topics. I have not published any names (confidentiality is key!) and I have answered them honestly (if I don’t know the answer, I won’t try and answer it…although in a couple of cases I have sought expert outside advice – in the form of neurosurgeons!). I hope you find them all to be helpful!
‘What are the symptoms when a shunt fails? Will I have enough time to react and go to the hospital to get treated?’
Shunt failure is the big, dark, spectre which seems to hover over all us shuntees at one point or another! It’s normal to worry about it but I’d guard against becoming obsessive about it as that can be very hard on you…I had my period of that about four years into having a shunt and I had to work hard to stop going into complete panic at the slightest hint of raised pressure. To be honest, in my experience when something has been wrong with my shunt..whether it’s overdraining, blocked or infected..I’ve known straight away. You just feel ‘wrong’. You will probably feel pressure in your head of some sort (this can indicate either low or high pressure as they can often feel very similar), your headaches may well worsen and you may get dizzy. But this can also mean you’re just on the wrong pressure and may need a shunt setting adjustment, not that anything is wrong with the shunt. Of course, you can feel headachey and dizzy if you get a heavy cold or virus too but with a proper shunt malfunction, the symptoms can come on pretty quickly. Uncontrollable vomiting is another common symptom with a blocked shunt and your vision may also be affected; my last malfunction made the vision in one of my eyes go very blurry. These symptoms are usually associated with shunt blockages or overdraining. With an infection, believe me you’ll know about it! I used to ask my surgeon ‘so does it feel like ‘flu?’, before I had my first and he said it does but it’s more a ‘head flu’ and far more severe…he also said I would just know. And I did. When I got my first infection, I knew right away that I didn’t have ‘flu! I had never felt so ill. I had a temperature, my head was raging and my shunt tract was red along my neck; I literally couldn’t move and if felt like the whole of the problem was inside my head – which it kind of was as the CSF was infected! I think you are right to be concerned about how much time you have to get assessed as waiting times in A&E are notoriously long. But they do tend to move a lot faster when you tell them you’ve got a shunt. If you are really suspecting a shunt malfunction, tell the doctor/ambulance staff that. Be direct and they will no doubt get you into the scanner quickly. If in doubt, go and see your doctor or call the secretary of your neurosurgeon and ask to have a quick chat with him/her. They usually never mind! It’s fine to be wrong and have your mind put at rest. But as I said, don’t panic yourself into a state over it. You may well have no problems at all. Bear in mind that people tend to post about issues they’re concerned about on here as they are looking for advice or just to sound off but there are a great many people with shunts who just trundle along quite happily! Hopefully you’ll be one of those!
‘Have you ever noticed a throbbing pain on the side of your head that your shunts on near your temple/near your ear? I’ve had them a few times and was wondering if it was normal lol’.
Yes it’s normal…and usually caused by scar tissue. Scar tissue forms naturally after our body’s tissue is damaged. The external scars we see, but the internal scars we don’t. Bruising and scarring goes on under the skin as well as above! It is fibrous tissue made of collagen which is produced to replace the injured skin. The downside is that being fibrous, it isn’t flexible and can feel not only tight, stretched and uncomfortable but can also cause a considerable amount of pain if a nerve gets squeezed or pinched by it during it’s formation. I’ve had scar tissue pain around my shunt valve, especially on my last shunt which was operated on over 15 times before it was replaced. The skin around the valve became so thin it eventually broke down altogether and you could see the shunt valve itself through a little hole in the skin! (NOT normal though so don’t worry about that!). I couldn’t touch the area. It was a sharp, stabbing pain which would come and go (the cold especially brought it on) and I couldn’t lie on it. I went to my neurosurgeon, Mr Watkins, and he put me on some medication ….I can’t actually remember what it was now but it helped considerably with the pain. It’s a complicated problem because operating to remove the scar tissue will only produce scar tissue! If you have sharp, stabbing or throbbing pain anywhere surrounding your shunt, go and see your surgeon.
‘Hey! Have you ever have a cyst like “thing” going on right by the abdominal scar of a vp shunt?’
I haven’t personally had this but I know a few who have. A couple of them needed to have antibiotics, one had to have it drained and removed and another one just kept an eye on it and no action was needed. Internal cysts can sometimes be caused by fluid build-up of CSF in the abdomen although this is pretty rare (known a pseudocyst). They can form after multiple revisions or infections and can get pretty large, causing stomach distention and pain. These are rare, however, and more commonly happen in younger patients. Usually cysts on top of the skin contain fluid or semi-solid material and can result from infection. Skin which has been operated on can become lumpy and bumpy; I have a couple of very ‘textured’ scars on my stomach! But if you have a cyst, it’s best to get it checked out. If you feel generally unwell in addition, it could be a developing infection. Keep an eye on it and if it’s bothering you, go to the doctor.
‘So this noise I’m hearing behind my ear where my shunt is…IS it my shunt? Does it mean something’s wrong? It’s starting to worry me!’.
Don’t worry. It’s very, very, very likely to be your shunt valve working! When the shunt opens to drain fluid, it can cause a sound very alike to buzzing; it just means that the mechanisms are shifting to allow fluid to drain. My shunt buzzes a heck of a lot but as Mr Watkins once said to me; ‘it should be a reassuring sound, because it shows that everything is working’. Well, yes it’s reassuring but depending on how close the valve is to your actual ear, it can also become as annoying as hell! By the way, if your shunt doesn’t make any noise, please don’t worry. Some don’t. My first shunt gurgled sometime but no buzzing happened…which is why when my new shunt was put in, I freaked out a little. If you feel physically unwell when the buzzing is going on, you may need to check everything is working okay. But if you feel fine and it’s just the noise that’s bothering you….well unfortunately there’s nothing you can do because even if you put your fingers in your ears, you’ll still hear it!
‘It’s been a couple of months since my shunt surgery (I had a programmable put in) and I still feel awful. I can’t get comfortable and I was hoping I’d feel better than this. Does it mean the shunt isn’t working? What should I do?’.
I got a lot of questions along these lines. And I feel your pain. Make no mistake, if somebody cuts open your head, drills through your skull, burrows a tube into your brain, all the way under your skin, down your body, into your abdomen and starts syphoning brain fluid out of it and then staples you up, you’re going to feel pretty crap. For quite a long time. Even if you previously had high pressure, it doesn’t necessarily mean you’re going to feel miraculously better once that high pressure starts to be relieved. Your brain may struggle to adjust to lower pressure. You can get vertigo, tinnitus, nausea and horrible head pressure feelings and this can go on for a few months. The key is to a) have patience and b) don’t be afraid to go to your surgeon if you really cannot cope with it. It could be that you need your shunt adjusted again. There is a window immediately after your surgery where you just have to rest, recover and take all the painkillers they give you…and even then it’s not pleasant. But after about six to eight weeks, if you’re still feeling really bad, it’s probably time to see your surgeon to discuss what happens next. It took me a year to recover from my second shunt infection which resulted in a full shunt revision and new pressure settings. My body just couldn’t settle. But I got there. And so will you (and very likely in far less time than a whole year!). Keep communicating with your surgeon and persevere.
‘What do you do when you feel bad all the time…it seems to be one thing after the other with me and I don’t like bothering my surgeon! Should I only contact them when it’s really, really bad?!’
I got a few similar questions to this! I really feel for you all because for ten years I was that patient too…I had one thing after another going wrong with me and I literally spent most of my thirties being ill, having surgery or recovering from it. To give you a better idea, in 2008 the only month that I wasn’t in hospital was September. For over ten years I had brain surgery on average once every seven months, which when you factor in the recover time, is a long time spent feeling bad! Neurosurgeons are there to help you. That’s why (and I know I bang on about this) finding one you can communicate with, who listens to you and who takes you seriously is CRUCIAL. Mr Watkins is not my first surgeon; he’s my third. I count my blessings I found him but it took four years of gruelling treatment and uncertainty before I decided enough was enough and that I really needed a different surgeon. You will get to know your head very, very well if you have hydro! Listen to it. And take heed of those ‘gut feelings’ because believe me, they’re often spot-on! You can feel pretty grotty with shunts without there being anything seriously wrong; it could be the weather, the fact you’re dehydrated or you may need a simple pressure adjustment. But if you are feeling rough and it’s not getting better, call your surgeon’s secretary. Make that appointment. If it’s nothing, your mind will be put at rest but at least your surgeon is also learning triggers which are not good for you; it will help them build up a better profile of your individual situation and of what works for you. You don’t need to go running to A&E with every little twinge, but if you’re really not feeling good, ACT. The sooner you’re investigated, the sooner you can get the right treatment and your mind can be put at rest. As Mr W said to me when I first met him and apologised for turning up in the hospital AGAIN, ‘I’d rather you were here so we can get to the bottom of this than at home steadily getting worse and me not knowing about it’. True words, spoken by the sort of surgeon you should have or be seeking to have!
‘Does the weather really affect heads? Because I seem to feel worse every time it rains! I don’t think my surgeon would buy that though!’
YEEESSSSSSSSS weather affects us! And don’t let the doctors tell you otherwise. Think about it. How many non-shunted people have you heard complaining of headaches when it gets stormy? Quite a few, I would imagine. If you throw a shunt into the mix, it’s a little more complex. I used to suffer a lot with weather changes but when I got my Miethke shunt, it kind of put a stop to it all. Sometimes if it’s extremely wet and windy, I can feel it. And I generally don’t like seasonal changes (Summer to Autumn or Winter to Spring). But I know a lot of shunted folk who really do suffer. It can be a good idea to keep a diary of when you feel really bad and make a note of what the weather is doing that day; you may start to see a pattern. If you can, make a note of the weather forecasts and try to plan ahead a bit, so if we’re entering a spell of really bad weather (or whatever type of weather which is your trigger) maybe reduce your plans for those days. Take it easy a bit, have the painkillers on hand and see how you go. On the plus side, if you do discover a pattern related to the weather, it can be a relief in itself to know it’s not the shunt playing up!
‘Any words of precaution or advice re long distance flying – problems encountered at security gates etc?’.
Generally people with shunts can fly. I know many who do. I choose not to, primarily because I have become so pressure-sensitive over the last fifteen years that even driving up into the local hills can affect my head badly if the weather is wet. I encounter pressure issues just standing upright at the moment, so I don’t think that flying thousands of feet into the air would be the best idea for me. I also don’t relish the thought that if I do get ill on the flight to wherever it is I’m going, I’ve then also got to get home! I think you have to be the judge of whether you fly or not…and I would always run it by your surgeon, especially if you planning on a long-haul flight. Some people are absolutely fine with it but some are not. A friend of mine had to fly to South Africa and after a bad initial flight (she became quite unwell on the plane and wasn’t good for some days afterwards), her surgeon gave her medication to take before, during and after the flights. And even though she didn’t feel great, she got through the consecutive flights a whole lot better, so medication may be a possibility if you’re worried. You can always start off with a short hour-long flight first to see how you go before going for a long-haul. Regarding the metal detectors, I would say carry a shunt card (you can get them if you’re in the UK from Shine Charity). That way you can avoid going through and they ‘wand’ you instead (but you have to instruct them not to wand over your shunt valve!). Some shunt models these days no longer use magnets – mine doesn’t – but to be on the safe side, I’d walk around the detectors instead of through them!
‘Have you experienced any issues with trying to get a job since you’ve had hydrocephalus?’
Yes I have. I have worked from home for most of my shunted life, after initially trying to return to my old, full-time, office job and lasting only three months! Again, it depends on the individual; I know so many people with shunts who have such a complex array of fluctuating symptoms that they don’t work at all and some (but to be honest only a small handful) who work full-time. It irks me no end with the recent skewed rhetoric of people on benefits being ‘scroungers’ or ‘fraudsters’ which seems to have seeped into the mindset of many in the last couple of years (thanks in part to both the government and the tabloid media). Because let’s face it, it’s hard enough living day-to-day with a condition like this…being told you can’t do your job any more can absolutely floor you. We need a purpose to get up every day to feel complete and having no job or opportunity to work can be extremely difficult. However, there are certainly things you can do to improve your chances of work. Firstly, think about what you’re good at. It doesn’t have to be office work. You might be creative and make amazing collages or artworks, you might be great on the piano or you may love writing. Could you make any of these work for you from a freelance perspective? Could you teach piano? Could you proofread documents for people? Could you set up a website selling your creative goods? It may seem farfetched to you at first but anything is possible…even when you’re not well a lot of the time…if you put your mind to it. Some charities and organisations can give you some great advice and help and despite my frustration at some of the statements issued by the government recently, there are some good resources on the government website; try Scope, Shaw Trust,and help page at gov.com. By the way, most of the help resources refer to ‘disability’; that seems to be the blanket term for people who are physically disadvantaged either by chronic illness or disability so don’t rule them out if you think the term doesn’t sum your particular situation up very well!
I set up a business teaching singing from home for many years. When I was well enough, I worked at stage schools and music studios. When hospital stays hit, I went back to teaching from home when I recovered. After a particularly nasty shunt infection in my abdomen which resulted in long-term pain, singing wasn’t as easy so I put the word out there and found some work-from-home opportunities via friends. It’s amazing what will come your way if you put the intent, thoughts and word out there. Try working part-time in a shop or office and if it proves to be too hard, don’t despair…sometimes we just need to think outside the box a little. If you cannot work at all, maybe try volunteering one day a week to get you out of the house and feeling productive. Maybe do an online course or take up a hobby which truly inspires you. The most important thing when it comes to working or trying to work with a chronic illness is NEVER FEEL GUILTY. You have enough on your plate without a guilt trip getting in on the act. Ignore the ‘get people back to work!’ cries from the DWP; if you really can’t do it, you can’t do it and that is never your fault. I have received a lot of emails recently from people worried sick about DWP work assessments coming up but I’ll cover that in another post another time (soon, I promise). Take your time, think about what you’d like to do and see if you can make it happen.
‘I read your post about hangovers not sure if I should actually drink at all and my surgeon never mentions it. Advice?’
That was the last hangover I’ve had! It truly put me off for life! My advice is to be sensible; if you have a drink and find that it gives you a headache, limit yourself to that one or don’t drink. If it’s okay, probably you have no need to worry as long as you don’t go binge drinking or do anything silly. I get a headache from one drink so I don’t often drink at all these days. I had a glass of champagne on Saturday at a friends 40th but I made sure I drank PLENTY of water before and afterwards so it wasn’t too bad. I just prefer these days to not indulge. At all! Bear in mind the dehydration side of things…if you have a shunt you need to drink more (water!) than most anyway on a day-to-day basis, so having dehydration after drinking isn’t a good idea. Just up your levels of water if you are drinking, watch the amount and be sensible. And you’ll probably have no problems. Or hangovers!
‘I’m 17 and love gigs but I can’t stand loud noise since my shunt was revised last year. I either don’t go, or go and suffer. The cinema is just as bad. Is there anything I can do?’
Yep..for the gigs, take earplugs. I’m serious. I love my live music too and I can go quite happily if I take my earplugs (foam ones). Yes it’ll muffle things and the music won’t sound as good but it’s better than missing out altogether. Regarding the cinema, that’s a little harder as the noise levels go up and down. Once I went and took cotton wool as well as foam earplugs and the cotton wool was much better! It protected my ears enough but enabled me to still hear the dialogue. I have tinnitus in my left ear from my first shunt surgery and ever since then haven’t been able to stand loud noises (thunder, balloons popping, cars backfiring, fireworks – I hate ’em all!!). So cotton wool and earplugs are my new social friends.
I hope these questions and answers help some of you….don’t forget, you can always ask more! I’m going to address this blog more frequently now the last few months of hectic-ness are over so I’ll get back to you more quickly this time. Have a good rest of the month, y’all!