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Chronic Illness & Work; Employment, Benefits & Never Feeling Guilty.

August 24, 2018

Right, I’ll be honest right from the start. I’ve put off writing this post, even though work and benefits are topics which so many readers ask me about. The reason I’ve put it off is because my some of my own experiences needing financial support over the years have been pretty negative. That’s not the sort of thing you want to share with people who are often already struggling. However, my own journey to forge a work path for myself has (although challenging at times) been a largely positive experience. So that I do want to share. I’m now on day 3 of trying to write this post, haha! My struggle between wanting to be blatantly honest and wanting to sugar-coat things a little bit to sound more positive is very, very real. It’s all about balance, folks!

I have included links in red to as many resources as I can. For readers who are not in the UK, do search out similar resources in your local area.

When you have a chronic illness, you can feel a bit crap (or a lot crap, depending on what you have) for much of the time. Working, whilst providing routine, interpersonal relationships, goals, achievements and most importantly Christmas parties, subsidised canteens and the odd office romance, can be a bit of a challenge on top of dealing with a medical condition. Oh and I nearly forgot. It provides us with money – you know, that thing we generally need to feed ourselves and put a roof over our heads. So yep, it’s kind of important.

Returning to work after an illness or returning with a brand new, shiny chronic condition can be a little daunting but it can also be exciting; it’s a sign of recovery and progression on a journey which may well have been frustrating at worst and downright distressing at best. So embrace this new phase, take a deep breath and see what you want to do and what you can do – you may be about to embark on a new and unexpected road in your life.

So, you’ve got hydrocephalus. The starting point is; can you work?

And the only way to get the answer to this is to try. Whatever stage you’re at (just been shunted/living with it a few years/newly diagnosed and no treatment plan yet) will determine your likelihood to be able to work. Everybody will be different with regard to symptoms. You HAVE to go at your own speed here. That’s an order. Jordi has spoken.

If you had a job before your diagnosis, try going back a couple of days a week when you feel ready/have the go-ahead from your surgeon and see how it goes. If you haven’t been able to work for a while but you’d like to try, maybe try doing some voluntary work (charity shops and hospitals are good starting points) for a while before you dip your toes back into the employment waters to get used to having a work routine (even if it’s only a day a week) and to start thinking about what you might find suitable. After a while you’ll have a good idea of what you’re capable of now and you’ll be able to think about which of the following options may be good for you:

Option 1: Yes I Can Work
Your employer and HR department will be able to assist you back into your job and work with you to accommodate any new requirements you may have (these could be along the lines of needing more frequent breaks, working less hours, having less computer-based work to do, fitting an anti-glare screen to ease headaches if you do need to use computers, etc.). If you can communicate to your boss what you feel will help you ease back into your role they should be able to provide you with what you need (they have a duty under the Equality Act to make reasonable adjustments to help you stay in your job). Don’t do too much too soon. Literally go back a day a week and build slowly up from there. If it’s too much at any point, make sure you speak up. Communication is key! It’s easy to feel you’re not doing enough if you were able to work more prior to your diagnosis but this is a very different situation and you are going to need to adapt accordingly. It can be a nerve-wracking time but just getting back into your work environment can also be massively reassuring and encouraging. And everyone will be so pleased to see you back!

Option 2: I Can Work But Struggle With My Original Job
This happened to me. I went back to my job of 5 years thinking I’d just ease back into it. Nope. That wasn’t going to happen. After a few months of trying (and feeling very ill throughout) I realised I simply couldn’t do this job any more. It was a very difficult time; I left with no job to go to and no idea of what I could do now (I was very symptomatic with visual distortions, hearing distortion and terrible headaches. Literally doing anything other than flopping periodically on sofas was too much). My desire to work was very strong however so I knew I had to find something else. Time to think outside the box. My job had been a high-pressure, long hours work environment (which I actually loved) and involved a ton of computer-based work. None of that was going to work for me now. If this sounds familiar to you, here are some ideas of what to consider:

Could you work from home?
Working from home = having your own ‘assistant’.

Do you have a quiet space you could get some work done for a few hours each day? If so (and you have a laptop or computer and a phone), it is quite possible to consider home working. I started looking on websites and in papers but this is going back 18 years! Now employment sites such as Indeed, WorkingMums and Fish4jobs have whole sections dedicated to work-from-home positions; in fact if you just Google ‘work from home jobs’ you’ll find plenty of resources! They may not be the most inspiring or career-building options but they can provide a good starting point for you, give you something productive to do and a positive focus if you’re worried about your work future. It may not be perfect but it can be a great stepping stone.
Think about the skills you have. What are your passions? What have you always fancied doing? Is it possible to turn into a reality? You may think it’s too big a leap to take but trust me, it’s one worth taking if you are harbouring a career dream you haven’t yet fulfilled. Of course being your own boss means you can accommodate dealing with any symptoms you may be having much more easily day-to-day! It’s amazing what you can turn into income if you put your mind to it.
Regency Delights – our re-enactment crew in Brighton Pavilon.

As well as singing tuition, I started up a company with 3 friends as we liked the idea of doing Regency re-enactments in Brighton (being a Regency city). So we did it. Idea-turned-income. Singing comes naturally to me; acting does not. I still get so nervous before any event that we do but pushing myself out of my comfort zone is never a bad thing. I always have so much fun in the end. And I get paid for having that fun; win, win.
Look at training options. If you feel like branching out on your own, have a look at local courses which might help you. Your local library can be a good starting point. Check out adult education courses in your area. The OU is of course always a good option if you’d like to consider a degree. Join a local group focusing on your area of interest and talk to members there for ideas; often talking your ideas out is the first step to your new career. Meetup is a fab idea..you can use it on a computer or your phone; basically loads of groups meeting in your local area, covering everything from fitness to socialising to business-startup discussions. And if you can’t find what you’re looking for, you can start your own Meetup.
Check the details. If you have a good idea of what you’d like to do, also check out what you legally need to do to get things up and running. The government website has a good introductory section. Startups also has lots of helpful information.
How I changed my career by feeling the pee-your-pants-fear-and-doing-it-anyway: I remember feeling a very strange sense of elation when I’d got over the shock of losing my job. I felt now I could do anything I wanted to do. Which was a bit daft because there was nothing actually stopping me doing whatever I wanted to do before, only I was on a path which had felt a bit conveyor-belt-like. I felt unable to get off it. Looking back, I know I wasn’t truly happy. Only nothing was THAT bad so I felt it was wrong to want to speak out and totally change direction. Being diagnosed with a life-changing condition seemed to give me the courage to do it. I loved singing and had been trained all my life so I joined a band as soon as I was able. I didn’t plan to make a living as a band singer but it we were doing paid gigs so it was a little income. I decided to better my skills by learning guitar whilst I was still recovering from my surgery. I went to a little music studio called Nick’s in Brighton to look for a guitar to buy. The owner got chatting to me (he was teaching the bass guitarist in my band at the time) and offered me a job as a singing teacher at the end of our conversation. I thought he was nuts. He was serious. He gave me as many intensive training sessions in teaching as I could manage (I was upfront about my health situation from the get-go), booked me in with my first student a month later (who booked again for the next week and brought her friend who also booked a lesson with me) – and hey presto! New career. True, I was so completely terrified before my first lesson that Mum had to take me for a coffee and then frog-march me to the studio to make sure I didn’t do a runner, but I remember the immense excitement that I also felt. It was scary as hell. But just closing my eyes and stepping off the ledge made me realise that I wasn’t necessarily going to fall. Instead, it was up all the way after that. It wasn’t an instant arrival; I had a lot of training to do along the way in terms of teaching skills. I had to absolutely cement my understanding of the voice, how it worked and how to communicate that easily to people with all manner of different vocal styles and abilities. It took a year or so for me to really become confident as a teacher; the fact all my students were booking repeat lessons with me for months on end was also a good indicator! I spent over 15 years working as a (successful) singing teacher and even though I’m now employed (as opposed to self-employed), singing tuition will always be something I can fall back on with confidence should I want or need to.

Option 3: I Can’t Work – Now What?
This may be true for a period of time, or it may be permanent. Whatever the time scale, the most important thing is to not despair. The overwhelming message I get from people who are unable to work due to their hydro is that they feel guilty for ‘doing nothing’. Losing the ability to work following an illness can be devastating but it’s crucial to remember that this is NOT YOUR FAULT. You know this. However. Since 2012 the government has been drip-feeding through the following narrative, lauding people who work as being those who ‘do the right thing’. Not that you probably need examples, but here are a few: ‘for too long, we’ve had a system where people who did the right thing – who get up in the morning and work hard – felt penalised for it’ (George Osborne, 2013), ‘you are rewarded for working hard and doing the right thing’ (David Cameron 2012), ‘they uphold their end of the deal – they do the right thing, they work hard, they pay their taxes’ (Theresa May, 2016)….and so on. I know I don’t have to point out the problem with this to you. If you are not able to work it is perfectly understandable, having faced years of the above being broadcast over and over in much of our mainstream media, to be questioning whether you are now theoretically doing the wrong thing by not working. Of course you’re not doing anything wrong. But when I receive frustrated and fearful emails from those of you unable to work and navigating the benefits system designed to help you – and getting refused, having assessments rejected and having to wait weeks for payments – it makes me so mad because this can feel like a punishment for not being able to work. And on top of the ‘do the right thing’ rhetoric it can be very damaging. So. I say to you to the following if you find yourself in this situation:

Don’t feel guilty. Being ill is not your fault (no matter what anyone says)
Make sure you have support (friends, family, GP; anyone you feel has your back)
Get armed with all the information you need (see below)

This is really important: USE THE CAB (Citizen’s Advice Bureau). I cannot stress enough how good they are. They will tell you what benefits you can and cannot claim, will help you fill in the forms, give you legal advice and all manner of things besides. Check out the main website for your local branch and book an appointment (you can get advice on everything from housing to health as well).

What Help Can I Get?

This will vary from person to person. It will depend on whether you’re single or not, have children or not, have savings or not – it’s impossible to give a generic answer! Your local Citizen’s Advice will be able to give you the right pointers but you can also use these Benefits Calculators to get a rough idea for yourself. Here’s a quick run-down of what you may qualify for though:

PIP (Personal Independence Payment – taking over from Disability Living Allowance or ‘DLA’). Valid for those aged 16-64. Assessments take into consideration mobility and ‘daily living difficulties’ – including preparing and eating your own meals or washing and bathing. DLA is still available for children under the age of 16.
Attendance Allowance – a tax-free benefit for people aged 65 or over who have a disability and need someone to help look after them.
ESA (Employment & Support Allowance) – for those unable to work due to an illness or disability (replaces Incapacity Benefit). This is the benefit for which you are likely to have to attend a Work Capability Assessment.
Disability Element for Working Tax Credit. This is available for those who are able to work 16 hours a week or more and who either claim a disability-related benefit or have been unable to work due to illness or disability for a period of time before starting back to work.
Housing Benefit. Definitely apply for this if you’re going to struggle with your rent. You should also get a reduction in Council Tax if you’re single or earning below a certain threshold.

All these benefits are designed to help you whilst you cannot work and support you back into work if you need that help. The application process can be laborious, I’m not going to lie…once again, your friends at CAB can help you with application forms and making sure you give the correct information. I also found staff at my local JobCentre Plus to be very helpful with this sort of thing too so it may be worth also popping in to see them.

So What If I’m Not Ill Enough To Claim PIP/ESA But Not Well Enough To Work Full-Time?

Ta-daaaaaaaa! Welcome to my world, friends. I’ve fallen between these two stools for years. I tried working full-time again (hahahahahahaaaaaaa!!). I applied for DLA (refused). CAB told me to apply again as I should get it (refused). I ended up applying 4 further times (refused, refused, refused, refused). I still had to pay rent, council tax and bills. I had to feed myself. Not easy when you can’t work full-time and working part-time isn’t enough to live on but you also don’t qualify for ‘disability’ benefits because according to the government, having repeated brain surgeries and a lifelong chronic condition which has constant symptoms doesn’t make you ‘disabled’ enough. I remember at an assessment being asked to walk around a table twice. Whilst I did it, I asked the assessor how my being able to walk twice around a table (no problem) had any bearing on the effects of intracranial pressure-swings (at the time a major problem). He didn’t reply. He also had never heard of hydrocephalus; I had to explain what it was and spell it for him. At the time I was having bad visual distortion in my left eye due to an angiogram mishap and kept crashing into things when it hit due to temporary blindness. No prob for the workplace apparently though! This was when I was really unwell and shouldn’t have been working; of course they found me ‘fit to work’. Luckily back then a GP had some sway in such decisions; mine was furious and sent a strongly-worded letter outlining the complex issues I was having and to my (huge) relief, I was pardoned and allowed to lie on the sofa until my head pressures had calmed down and the damaged nerves in my eye had healed. This didn’t cheer me up at all; I wanted to work; I was simply unable to at that time.

I know that now things are much more difficult for applicants who have chronic illness; it simply isn’t recognised by the government as being satisfactory for disability-related support in many cases and this is a huge bloody problem. Chronic illness means you have good days when you could do some work and bad days when you can’t. But the current system requires you to be pretty severely disabled on most days in order to qualify for help. So if you’re able to work a few days a week only, that’s it. The fact you can’t change that situation and are stuck with it for life is disregarded. Unfortunately this is not an issue I can wholly address (or give suggestions to fix) here. Unless Esther McVey is reading this. In which case; stop believing this system works and sort it.

So how do you manage if this is your situation? The best thing to do if you want to work but can’t work full-time is:

Find a job you can do comfortably and enjoy (part-time)
Get housing benefit to help with the rent (it won’t apply if you have a mortgage)
See if you can work 16 hours to qualify for the Disabled Element for Working Tax Credit (I was on this for a long time before I became too ‘well’ and it was a really huge help) and maybe some ESA if you can only work a few hours.
Finally, spend time doing things which make you happy, with people who make you happy and take each day as it comes.
NEVER FEEL GUILTY. Celebrate what you are able to do. Embrace each personal achievement, no matter how small.
And remember…..

2 Comments

You Asked; I Answered – Shunts, Lifestyle & Strange Feelings.

June 2, 2015

**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!

So in February I asked if anyone had any questions they wanted answering….and the answer was ‘yes’!

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!

Shunt Worries

‘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!

Lifestyle

‘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!

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

May 30, 2014

ICP probes and all that jazz

ICP monitoring is a term you may have heard of if you have hydrocephalus. You may have had it before; this post is really aimed at those who are due to have their first, to give them a real idea of what it’s like. I am a firm believer in the ‘knowledge is power’ school of thought. I have had about ten or eleven episodes of ICP monitoring so am pretty old-hat at them by now but even so, my latest experience involved some new experiences so I thought it wouldn’t hurt to write a ‘what you can expect’ guide for first-timers. Doctors and surgeons do have a tendency to be a little blase about such procedures. They’ll tell you about what they’ll physically do and it all sounds very straight-forward. But of course they’ve never actually had a bolt screwed into their skulls with a probe sticking into their brains before so in terms of what it actually feels like (which is the bit we patients are concerned with), the experts are the patients, not the healthcare professionals. Looking back, I wish I’d had more first-hand information from a patient who had had it before, especially the removal part as this is done with you wide awake. I have a lot of patients-to-be on this blog asking me if I’ve had it and what it feels like which is why I decided to make a little video and actually film my bolt being removed – the link is further down. ICP stands for intracranial pressure, the pressure that is exerted by the CSF (cerebrospinal fluid) inside the ventricles of your brain.

Me ‘n’ My Bolt

When this pressure is within normal limits, you generally feel fine. If it’s too high or too low, you generally feel pretty crap. The ‘normal’ limits (as read on an ICP monitor) are between -10 and +15. Of course this will depend on the individual; I cannot handle pressures over +10 and below -12. If I had a pressure reading of +15, I’d probably have double vision yet I’ve been on the ward many times with fellow ‘bolted’ patients opposite me recording pressures of +25 and not really batting an eyelid! Generally surgeons will get concerned if the pressure heads towards +20 and will intervene at this stage. ICP monitoring is a really good diagnostic tool; it reads the pressure every minute of every day and records what’s happening when you’re awake, asleep, eating, standing, sneezing or just reading a book. At my hospital, the National in Queen Square, they hook you up to a laptop as well which draws out an impressive little graph which shows any spikes or dips in pressure at a glance. You may have ICP monitoring if you’re feeling generally off and adjustments to your shunt settings haven’t helped, or if your surgeons are suspecting a shunt malfunction of some sort. I was going to include some photos of the bolt and probe itself but having looked at the pictures I think I’ll leave it as they don’t look like the friendliest of items, to be honest!! Basically the unit consists of a long-ish probe and a bolt which is screwed into the skull; the probe slides through this bolt and is screwed into place with the nut. Literally a nut and bolt in your head. The procedure to insert it is generally done under sedation although sometimes it’s done under a local anaesthetic. It takes only a few minutes apparently. I say ‘apparently’ because I’ve never had it done under a local; it’s a personal preference. I know many who’ve had it placed with just a local anaesthetic and who don’t mind it at all. I can handle most things but the thought of someone drilling into my skull whilst I’m awake – nah. The hospital you’re at will probably offer you the choice so it’s up to you!

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

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

they usually set the monitor at your bedside and once you’re hooked up, they can read the pressures all day and all night as well when you’re asleep. You can ‘unplug’ yourself and go to the loo, go for a quick walk and so on if you feel up to it. Once the bolt is in, it does hurt a bit; it’s quite sting-y where it’s been screwed into place and if you raise your eyebrows up it stings even more. The solution is to not raise your eyebrows up or frown. Basically, get botox. You can’t feel the probe inside your head but you will feel it move if you forget you’re plugged in and get up to go for a walk without unplugging yourself first. Nothing bad happens; you just get yanked back to the bed but it does feel a bit odd for a minute!
It takes a day or so to get used to having wire hanging out of your head. At nighttime in particular, it’s best to clip the wire out of the way onto your pillow, otherwise as you toss and turn during sleep, you may find yourself inadvertently tugging on it and will get woken up repeatedly with a sore head. I find it best to use those tiny little hair clips

Clipped and ready for snoozeville!

(get them from Claire’s Accessories or similar) and clip the wire to the top of my pillow, making sure I’ve left enough room for me to roll in the opposite direction without pulling. Once that’s done, you can get a good nights sleep in. Just don’t forget to unclip yourself in the morning!
Depending on how long your surgeon is planning to leave the bolt in will probably depend on whether you attempt to wash your hair or not; if it’s only a few days, you can easily leave it. But for ‘monitor marathons’ like the four weeks I had it in for, you’ll probably want to at least try to wash your hair at some point! This is possible but you just have to be very, very careful; getting the bolt wet is not an option. It takes a bit of practice, but it’s do-able; I have found over the years that the easiest method is to gather the wire in your mouth to keep it well out of the way, make sure you can see yourself in a bathroom mirror (so you can see as well as feel where you’re directing the shower spray) and if you can’t see your reflection, get a friend/family member/nurse to carefully place some towelling around (not on!) the bolt to keep it dry. Then, when you wash your hair, you simply wash up to the towel. As long as you keep the bolt and surrounding area dry, it’s okay.

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

Some hospitals are stricter than others about this but to be honest I’ve never known any hospital keep ICP bolts in heads for as long as they do at the National, so the staff there are pretty understanding about it! Besides, I think it actually helps to keep the surrounding hair clean and not let it get very dirty over weeks, to help reduce infection. I have no idea if that’s actually true but it makes sense to me!

Adieu, Lil’ Bolt, Adieu

Having the bolt removed is often the part that most people are apprehensive about as that’s the bit you will be awake for. It only takes about five minutes to do so you can understand why they don’t bother going through the whole ceremony of an anaesthetic and besides, apart from the stitching-up bit, (which does hurt), it’s really not too much of a bother. I won’t lie; it feels weird. After spending all your time when it was in trying not to knock it or bang it or get the wire caught, it does feel very wrong to have someone suddenly grappling and tugging at it. I filmed the removal of my last bolt in October; the link is right here – don’t worry, it’s not gory – but in case you don’t want to watch it, I’ll describe what happens as best I can. First they get you to lie flat. This wasn’t always the case at the National so it may vary from place to place but nowadays, you lie flat. A nurse or medic will start off by unwinding the plaster or dressing which surrounds the bolt itself, usually soaked in iodine to keep everything clean. Then they’ll unscrew the nut on the bolt to loosen the probe itself. This can feel a bit strange, but noting too odd yet. When they actually pull the probe out, sometimes they’ll ask you to breathe out sharply after three, and remove it on ‘three’…this time they didn’t ask me to do that and all I felt was a slight sting and a strange but very fleeting feeling in my head…then it was out, in a second. After that (and you’ll see this in the video) it can feel like it’s all over – I keep asking ‘is that it?’, rather hopefully! But no, they then have to get the screw out of your skull. This is the bit that does feel odd; the screw is obviously screwed in tightly on insertion so it can be a bit of a job for them to undo it. My advice is just breathe slowly! When they take it out it stings again but nothing terrible. After that they’ll clean the area with iodine; it’ll feel sore but it’s quite a relief to know it’s all out and done with! The final thing for them to do is stitch you up; you may not actually need this but I lost some CSF when they took the bolt out so I needed quite a deep and tight stitch. Now, the truth is this bit does hurt. A lot, if I’m completely honest. I’ve not met anyone who’s had this bit done and who hasn’t thought it to be pretty darn painful. You can actually get a local anaesthetic put in first before they stitch you up if you want, but having had that once, I’d say it’s not really worth it because it takes about three injections to properly numb the area and that really stings in itself! Best to just grit your teeth, get something to grab hold of and get on with it! In the video, you’ll see my big fat fail in just breathing calmly through the stitching bit! It really, really hurt because they had to pull it so tight to stop the CSF leak…it definitely hurt more than any other one I’ve ever had if that’s any consolation! I think it’s because it had been in so long; the longer it’s in, the sorer it gets. But after I’d had a good slug of Oramorph, it died down after about an hour. And that’s it!

Yay! It’s gone!

Bolt is gone, you’ll have a nice stitch in your head and you won’t be tethered to a machine anymore! Freedom! You may be asked to lie flat for a couple of hours afterwards and then you can get up and go home. Very occasionally your head may object to all the probing, tugging and stitching and stage a full-on protest afterwards. Mine did this this time around but it’s never done it before and I know from the experiences of others that it is very rare. I developed terrible pressure, headaches, distorted vision and nausea for about thirty-six hours afterwards. But all that happened was that I was kept in, monitored closely (a CT scan was done but came up fine), given as many painkillers and anti-sickness as I needed and was only allowed home when I felt well again. It was a real surprise that this happened because I did feel very awful indeed, but it was a first. It very, very, very likely won’t happen to you; I am notoriously pressure-sensitive. But I have always said I’ll be truthful in this blog so I wasn’t going to lie about what happened this time around. Generally though, ICP monitoring is a little tedious (being tethered to machines is unusual) but is really, really helpful to your surgeon to determine exactly what your head and your shunt are doing so it really is worth having it done if it’s needed. The discomfort passes and you will hopefully feel loads better afterwards. Plus it makes for some very interesting photos to send to your friends/family/boss to impress them!

At the end of the day, although it’s not something I’d opt for voluntarily (given a choice between a days shopping and ICP monitoring, I know what I’d plump for), ICP monitors can really help get to the bottom of not-too-obvious shunt issues and this helps you get better more quickly. And best of all, they’re pretty darn safe. And when it comes to our brains and our health, that’s what we want!

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

August 7, 2013

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

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

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

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What’s it really like to have a brain surgery? – Living with hydrocephalus

July 15, 2013

If I had a pound for every time somebody has exclaimed; ‘you’ve had brain surgery? What was that like?’, I wouldn’t have to work. Well, maybe I’d have to work a bit – but I could certainly reduce my hours drastically. Brain surgery has a stigma surrounding it similar to that of cancer; people fear it. Even though, like cancer, treatment had catapulted in effectiveness and safety over the years, it still holds a dread for many people and when faced with it, it can be all-consuming. It’s not surprising really, given the fact that the brain controls your entire body. To have it once is certainly an experience, a story to tell at the pub. To have it nineteen times as in my case is, I suppose, a little odd.
I thought I’d do a series of short-ish (I can hear the cheers already) posts on what it really feels like to have brain surgery, to have a shunt inside you, to experience overdraining/underdraining and so on, to give an honest picture of what it’s like for those maybe facing it for the first time or who sometimes wonder if they’re the only ones who feel a certain way. Although every body is different, my experiences over the years and conversations with the many, many shunted folk I have had the pleasure to meet have taught me that actually, our experiences can feel quite similar, both physically and emotionally. I’ve linked to some pictures of scars and so on which you may not want to look at, so just don’t click on the links if so. So let’s start with the big one;

What’s it really like to have a brain surgery?

Well, I’m not going to lie; it’s not exactly fun. Given the choice of that and a champagne picnic in the park, I know what I’d choose. But it also isn’t necessarily all that awful. In fact, in many cases it can be better than you’d hoped. A lot of what makes it bad stems from what takes place in our minds and we can, to a degree, control that. This, I have learned, is the difference between having a horrible experience and an okay one. Yes, brain surgery can be okay.

Pre-surgery
The days leading up to the surgery itself are important; depending on how ill you are will determine what you’re able to do, obviously, but it’s good to have distractions if you can. My first ever brain surgery (to install the first shunt), even though it happened thirteen years ago, is crystal clear in my mind to this day. That’s because I was so damn scared. My stomach was in knots all the time (this is normal), I lost my appetite (also normal) and wanted to crawl under the bed until it was over (again, normal). Luckily I was well enough – just – to be driven around in a car so the day before my parents took me for a pub lunch (no alcohol!) to take my mind off it. It worked. It was a lovely Spring day and even though the thought of the surgery tomorrow kept looming up at me like a tidal wave, I found myself wanting to and needing to push it to the back of my mind. So I did and managed a lovely lunch with my family. Eating is important; keeps your blood sugars steady as well as your blood pressure level and that helps. It also helps if you can remind yourself of the thousands of people across the world who have brain surgery every single month and who are fine afterwards. Focusing on the teeny proportion who might be suffer a complication, I found, does not help. At all.
The morning of the surgery itself I was starving; nil by mouth, obviously! This doesn’t help the nerves so again, keeping busy is good. I watched a lot of crap telly that morning. When I didn’t want to watch telly any more, I read crappy magazines – you know, those ‘chat’ type magazines where people sell their stories of how their breasts ‘exploded’ after surgery and so on. Some of the stories are so awful (if they are in fact true) that brain surgery suddenly does seem like a champagne picnic in the park.
I did have a complete break-down though, mid-morning. Suddenly the fear and nerves got the better of me and I bawled like a two year-old, loudly, snottily and unashamedly. I’d never had a surgery and having seen my dad go through it when I was eleven (he had two brain haemmorhages and a blood clot and very nearly died), I simply wanted to crawl under the bed I’d mentioned earlier. It didn’t last long though. Fifteen minutes later and I felt a lot better. Cry if you need to and don’t worry what others think; also talk to your surgeon/anaesthetist about your fears. He/she will have heard it all before and be very kind and give you a hanky, the way mine did.

The anaesthetic room
Funnily enough, this scared me probably more than the thought of the actual surgery. I dreaded it, not having had an anaesthetic before. I couldn’t see how I could be wide awake one minute and then something would force me to go to sleep the next. Fast foward thirteen years and the anaesthetic is my favourite part of any hospital stay. Yes, I’m being serious! I actually look forward to it! In the National Hospital, they have special anaesthetic rooms next to the operating theatres themselves, which I prefer.

The anaesthetic room at the National Hospital looks exactly like this one. I like ’em.

Operating theatres I find a bit large and scary. They’re okay; but I prefer the little cosy rooms next to them. It’s always the same; you lie on your trolley, blanket over you whilst the anaesthetic team take your blood pressure, check your heart rate by sticking those little sticker things you see on ‘Casualty’ over your chest, ask you lots of questions about who you are (they don’t want to knock out the wrong person) and then chat to you about all sorts to relax you and put you at ease. They’ll put in a cannula if you don’t already have one; that’s a very fine tube in the back of your hand so they can put the medicines in there without having to keep on injecting you. It’s a pin-prick, really not that bad. Then the fun starts! First they (sometimes, not always) give me what they call a ‘painkiller’ which will help relax me. This might also be given to you as a ‘pre-med’ on the ward. God, it’s fun. Seriously good stuff. It’s like having just had the BEST night at the pub, ev-ah. I have sometimes started singing after they’ve given me this. I kid you not. I sing loudly, too, like I’m hoping they’ll all join in. Sometimes they do; it depends on who’s in there with you. Having an anaesthetic truly feels like being very drunk; dizziness, sleepiness, a strange urge to giggle…sometimes you get pins and needles in your face. None of this is unpleasant, I promise. A bit strange the first time, yes…but not unpleasant. I think it’s fab. The really, really strange thing is ‘waking up’. I put ‘waking up’ in inverted commas because most of the time I’m not even aware that I’ve gone to sleep and then woken up later. I usually think I’m still in the anaesthetic room and the staff have just changed over. It’s that quick and that seamless. Seriously, you don’t even dream!

The Recovery Room
This is usually where you’ll wake up. After nineteen surgeries, I am yet to wake up anywhere other than here. These rooms are much bigger than anaesthetic rooms but are not as cosy as hospital wards.

It’s big, it’s echoey and lots of beeps and alarms go off in here. Meh.

To be honest, waking up is not my favourite bit. Once I’m properly awake, I usually feel a bit uneasy because I don’t know what’s been done exactly during the surgery (sometimes when they ‘get in there’ they have to change their course of action) and I feel all groggy and confused. My heart rate tends to race and sets all the alarms off but it’s never dangerous; it’s just what my body does after anaesthetic. As I said before, every body is different so you may well not experience this. You will shiver because the operating theatres are kept very cool indeed and you’ll have been lying in there for hours. The nice thing is having the heated blankets put on you, which they have lots of..very toasty! Your throat will probably be sore from the breathing tube but you should be able to have sips of a drink. At the National, they always let us have a cup of tea (through a straw) and I swear, it’s The. Best. Cup. Of. Tea. In. The. World. Nothing ever tastes as good! Usually I’m pumped full of morphine for the pain so I can still feel pretty woozy from that alone. As you become more aware as the anaesthetic wears off, you may become aware also of pain and discomfort. Don’t be a warrior; take the drugs! After a few hours in the recovery room, once they’re happy with how you are, they release you for good behaviour. Back to the ward you go.

The first few days
The first day itself you’ll probably feel sleepy but okay. They pump you so full of painkillers during the surgery itself that it’s relatively easy to keep on top of the pain. Back on the ward they’ll check your blood pressure, pulse, heart rate and so on every couple of hours. You can EAT! Hurrah! But don’t be surprised if you feel quite nauseous; lots of morphine can do this. I tend to vomit for hours if I have too much so I try and limit it. Morphine can also make going to the loo a bit weird; even if you have a full bladder, it seems to not want to come out. Again, all this is normal but it can be odd the first time! The physiotherapists or nurses usually try and get you up and about at some point on the first day unless you’ve had your surgery late or if you’re really floored afterwards. Don’t do what I tend to do and try and go for a walk on your own after five minutes. I blame the morphine again! It can make you feel invincible. I have got into trouble for leaving the ward to go for a walk as soon as I’m back. Wait until they get you to do it with their help, unless you want to end up in the ‘naughty spot’; right next to the nurses station so they can keep a close eye on you!
The next few days you should (hopefully) start to feel bored with being in hospital. I say ‘hopefully’ because this is usually a good indicator that you’re well enough to go home soon. The stitches or staples will probably itch a bit but as long as they’re not oozing or looking infected, that’s fine. Depending on what type of brain surgery you’ve had, you’ll probably feel some strange and not altogether welcome sensations in your head. With a new shunt, I feel very tight and stretched over where the new shunt tubing is. With my first one, I heard ‘gurgling’ in my head which was rather alarming. Turned out it was just the fluid passing through the shunt valve. Now the shunts I have ‘buzz’ when the valve works. Anything that alarms you, tell your surgeon. Chances are, he/she has heard it all a hundred times before and can reassure you.

The next few weeks
I covered a few points in my post about recovery: click here to read it. I think the most important thing post-brain surgery is to remember that you’ve had a whopping great operation. Your brain is going to be swollen and bruised from having someone rummage around inside it. The anaesthetic itself is a powerful cocktail of drugs and that’s just for starters. So you’re bound to feel wiped out. Recovery can be hard; everything hurts, the scars itch like mad, you’re left with half a head of hair and resemble Frankenstein. I have added a photo of me looking absolutely rubbish post-op to reassure those who feel the same way that you’re not alone. I’ve also added three photos of scars immediately post-op – the other one’s here – and one taken a couple of weeks later. Scars like this can look a bit shocking at first. But you should be proud of every scar; they’re proof that you’ve been through a lot and come through the other side. Yay you!
As the weeks go on, you’ll feel stronger but don’t push yourself. It’s very easy to overdo things without realising. Rest when you need to, don’t rush back to your job too early (I once returned after ten days; stupid, stupid me) and hey, enjoy some R&R!! You deserve it! Heck, you’ve just had brain surgery!

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Living with hydrocephalus: Hydrocephalus + Job = Difficult

April 9, 2013

It’s a Bad Head Day. Most people have Bad Hair Days. Well, I have those too…notably for about six months following a surgery when the surgical team have shaved off half my hair. But Bad Head Days are more frequent. Today’s has been caused by the weather. My head does not like changes from high barometric pressure to low barometric pressure. Not only do I feel pretty rough, but I had my boss call me up this morning (I work from home – the only way I’ve been able to hold down a job for any length of time) to let me know that last night, during my work shift, I made four errors. This is odd for me. I’m usually uber-careful and double-check everything before I send it off as I am fully aware that a shunted brain doesn’t always produce perfect work. I double-checked my stuff last night too but seems that it didn’t make an awful lot of difference.

My Sofa: My Friend (on days like these). Hoshi the cat (curled up on the right) is also My Friend.

Today I am mainly on the sofa with a throbbing head and feeling glad that I don’t have to go anywhere/talk to anyone (apart from the cat) today. Well, until I start work tonight. Holding down a job with this condition is damn hard. We look fine, we seem fine – and out of nowhere, we can go a bit strange, with no warning. Working for myself and from home has been a Godsend for me. It’s literally the only way I’ve managed to always work, throughout the whole thirteen years since my diagnosis, during the periods when I’m not very ill or having surgeries. I was employed in the years leading up to being diagnosed and for four months afterwards in a high-pressured, high-energy job which I loved. I loved the buzz, the stress and pressure even and the salary! It only took three weeks after being back in the office after an absence of seven months (the amount of time it took me to deteriorate, be admitted to hospital, be kept in, have the barrage of tests that ensued, have the major surgery and recover sufficiently) to realise that keeping that job was no longer an option. I was brokenhearted. My company were too and very generous and supportive but it was a no-brainer (pun very much intended).
I will post about how I made the transition from Sales Administrator to Vocal Coach another time – it’s a story of determination, thinking outside-the-box, perseverance – nah, not really. It’s a story of complete panic and desperation. But the former sounds better. Right, my brain is positively staging a sit-in protest now (or rather, a sit-on protest; it’s refusing to allow me to move from the sofa) so I’ll post when I’m feeling better. Which will be tomorrow. That’s an order, brain.

An intro to hydrocephalus. Complete with ideas for a Cream Cracker Challenge and a few pics. (jordantheheadcase.wordpress.com)

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Living with hydrocephalus: The Hydro Hangover

April 7, 2013

I have a hangover. This is not good. Hangovers are never good at the best of times, but when you have hydrocephalus, it’s a bad situation. I would like to state before I continue that this is a pretty rare occurrence. I have not become teetotal since my diagnosis; in the early years of my reluctance to accept my new condition I would sometimes go out and purposefully get drunk, as if to say to the rest of the world (but really more to myself), ‘See? I am just like everyone else! I can go out to clubs, dance too much, drink too much, suffer too much the next day and get over it! My life hasn’t really changed completely!’. Of course the reality was that I would suffer far more than a generally healthy person would and it would take me days to get over it. Luckily this phase didn’t last. I snapped out of it quickly enough once acceptance kicked in and since then I’ve been pretty healthy. But I still have a social drink and sometimes a glass at home in the evening with dinner. But hangovers – nah. They’re simply not worth it. For anyone wondering how drinking may affect a shunted brain, here’s the lowdown;

Alcohol swells the blood vessels in the brain pretty damn quick; if you’re erring on the side of higher-than-normal pressure anyway (which many shunted folk do), it’ll instantly make your head feel bad. If you’re erring on the side of slightly low pressure (which I tend to do a lot) it makes no real difference – yet.
It doesn’t take much to get drunk. I mean, hardly anything – two glasses and I’m phone-texting inappropriate people to tell them I love them.
Even slight increases/decreases in brain pressure can make you pretty dizzy and it’s worse if you have a shunt. Falling over happens.
The next day, dehydration of the brain means one cracker of a headache. This isn’t from the brain itself; there are no pain receptors in the brain. It’s all the surrounding bits which hurt. The meninges (layers covering the brain) have pain receptors in them. They also have blood vessels which, during a hangover, are stretched thin due to low pressure, due to dehydration. When they stretch, they irritate the pain receptors. The pain receptors wake up and get to work, hurting the crap out of your head.
Filling up on water doesn’t help either; the blood vessels in the meninges then get pushed the other way as the fluid gradually returns to the brain, irritating the pain receptors and – you get the picture.

So if hangovers of yore, before I was diagnosed, seemed bad, hangovers now are on epic proportions – even if I haven’t actually had that much to drink. Nowadays I have a hangover like this one about once or (sometimes) twice a year. I’m very careful with how much I drink. Sometimes, though, it just happens. Like last night. Friends over, long-overdue catch-up, singing along to music – it was great. I thought I was doing all the right things; I diluted my wine with lots of ice, drank a non-alcoholic drink every so often, had a pint of herbal tea before I went to bed (not in a pint glass; I’m not a heathen. I just like really big mugs which hold over half a pint) and it still didn’t make one jot of a difference. As soon as I opened my eyes, I knew. Lying still wasn’t going to help. Pretending I hadn’t actually had any alcohol wasn’t going to help. NO-THING was going to help this one. Ouch.

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