My little lockdown companion. She sleeps strangely and I love her.
It’s 1.00pm. It’s Saturday, 9th January 2021. I’m sat on the sofa with Hoshi the cat sprawled half on me and half on her heated throw as she’s still undecided as to which is preferable. I’m watching the news whilst typing this and I think I’ve done this every day for 10 months now. The news changes. Life in its daily form does not. How are you all doing? I hope everyone is as alright as can be and finding a way through all this. I thought I’d get in touch and say ‘hi’, now that I’m well on the road to recovery from my dose of Covid and feel a little more up to writing. My apologies to all of you who have got in touch with comments and questions in the past 10 months. I am working my way through all of them and you’ll see them appearing on here over the next few days if you’ve not yet had yours published. It’s always good to hear from you!
I ended up having ‘long Covid’ – and boy, was it long. Nine months of real unpleasantness. The cough still returns on some days as does the crackling in my right lung, where the blood clots are. But the crushing fatigue and bone pains have pretty much gone although I have to watch what I do. I just feel very lucky to have recovered, especially with the statistics spiralling upwards at the moment. I’m very glad to know the vaccines are here and being administered (my Dad got his on Sunday and my Mum will get hers early next month). I won’t likely get mine until the Autumn so for now I’m being super-duper careful in my efforts to not get reinfected, which is a total possibility so far down the line after my initial infection. Like so many other single people, I’m literally at home all the time on my own apart from going out for a run, which I’m trying to do every week now to slowly build my strength and stamina back up. I live alone by choice at the moment so I’m used to my own company, but I’m definitely missing my work colleagues and daily communications with other people. I must say, however – to all parents who are homeschooling their children throughout these lockdowns – I HOPE AFTER THIS ENDS YOU ARE ALL AWARDED MEDALS.
This to me feels like my first ‘proper’ lockdown. I was far too ill during the first one to participate in anything, do any Joe Wicks workouts, watch any Netflix, bake any banana bread or do any Zoom quizzes.
I made these when I was feeling better. Then I gave them all away because I live alone and I have no willpower and no good can come from having a plate of these in your house when you’re in lockdown.
The months passed by in a blur of intense coughing and fatigue, hospital and doctor visits, severe insomnia, countless courses of (useless) antibiotics and regular socially-distanced visits from my brother and his girlfriend who would sit in the front garden to give me some much-needed company and meds. This lockdown, I’m well enough to be bored which is actually a huge relief. My workplace is closed for the foreseeable future so whilst furloughed, I’m trying like everyone else on Earth to find some routine and purpose for my days. My new activities include;
Yoga with Adriene
Baking banana bread (and cakes)
Regular Zoom sessions
Catching up with work for my charity
Basically, everything that everyone else was doing during the first lockdown. I am so unoriginal. Although I am also teaching myself Salsa on Youtube (minus a partner, the position for which I’m hoping will be filled by a tall, dark, handsome-ish type who makes me laugh so hard I want to wee and who will miraculously find his way to me in the middle of a global pandemic when half the world is in lockdown because in my head that’s completely possible). I’m quite enjoying Yoga With Adriene; I can touch my toes and everything.
Yep, that’s EXACTLY how I look when I do this position! * *I’m lying.
Adriene is brilliant and can bend into positions I thought were only possible for paperclips. Doing yoga with a cat in the house is literally impossible, as any fellow cat owner will tell you. For every Downward Dog I do, there will be an Upward Cat, licking my nose and purring.
The only other eventful thing happening in my life is that my shunt, after nine years of impeccable behaviour, has decided to retire in the middle of a global pandemic when half the world is in lockdown and hospitals are overrun because OF COURSE IT WOULD. The surgery to replace it was cancelled last Spring, the upcoming appointment to see if a pressure adjustment might see me through for a couple more months has just been cancelled and for now, it’s just a case of trying to manage the symptoms and get myself to a hospital if things reach emergency-levels. The hospitals are just too busy to see me. I’m having regular telephone and email contact with my surgeon and his team and feel fully supported by them, as always. The only thing I feel bad about in this situation is the predicament of the NHS staff; every single one I’ve spoken to over the last few weeks and months has, without exception, sounded exhausted in a way I’ve never heard before.
These guys – both of whom have operated on me countless times, doing their time in the Covid ICU (on top of their neurosurgical work). Heroes.
I’ve come to know so many of them so well over the years that I also worry about the risks they are taking daily but so far, none of them have contracted it due to the good PPE they are lucky enough to have access to.
So, for now, it’s a strangely familiar but not-too-welcome routine of dealing with overdraining symptoms; drinking litres and litres of fluids – but rarely going to the loo which is really weird – caffeine as late as I can in the daytime to increase the pressure in my brain, lying flat if it gets really bad and waking in the night with headaches that painkillers just don’t seem to be able to stop. Then I’ll get a day where everything seems pretty okay and I’ll get all hopeful that maybe the shunt is actually working fine, only for the day after to be back to the aforementioned routine. That’s slow shunt failure for ya! From previous experience, my shunt rarely packs up suddenly (knocking on SO much wood, here) and simply gets more and more clunky until leaving it in is simply no longer an option. We try to act before this stage as I end up far more ill and having a far longer recovery as a result. But this time, I have a feeling we may end up on the unfavourable side of waiting and if that ends up being the case, it’ll all be fine. It’s life; sometimes it goes the way we want and sometimes the rug gets pulled from under your feet and you’ve just got to find your balance and wobble along for a bit. And the whole world has had to do that this past year. I wish you all well, pray you all get through this Covid-free and as a parting gift for this post, I refer you to the legendary Dolly for words to live by:
She rocks. If you disagree, don’t tell me. It won’t end well.
**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!
‘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!
Hello everyone! I’m so sorry for the mahoosive delay between my last post and now. I’ve been busy with work, sorting out shunts to send overseas and had not one but two laptop disasters;
Caught in the act.
first one caused by my cat secretly sleeping on the keyboard when I was out of the room and clogging up the fan with fur and the second caused by a mug of tea with a broken handle. You can guess the rest. But never mind, for ’tis Spring! Hurrah! I love Spring. Spring means flowers and bunny rabbits and seven very sweet little lambs appearing in the field next to your house, bouncing (and bleating) incessantly in the cutest manner imaginable. Any jokes about mint sauce at this point shall NOT be appreciated.
Thankyou for all your lovely comments during my absence.
One of my new little neighbours. Awwwww!
It’s great to know what people think about this blog; it’s not so great to hear of the difficult episodes some of you are dealing with regarding your own experiences with hydrocephalus but I do think it’s a comfort at such times to know you’re not alone. My own head is still being treated as an outpatient (outhead?) at the National Hospital with pressure adjustments being done every couple of months. We’re still not there yet following my glitch last year. My lovely registrar, Akbah, did say that it would take around six months to a year to get me well again and it looks as though (again) he is going to be correct. I’ve gone down three settings since I left hospital and I’m experimenting with things which might affect the pressure, such as my bed (usually raised on bricks at the head-end as I can’t bear to lie flat so am trying one brick, then two bricks, then no bricks), excercise, work hours and so on. I feel much, much better than when I left hospital so I know we’re going the right way. Is the fact I STILL feel ill frustrating? Yes. Does feeling down about that help matters? No. Onwards and upwards, then!
Changes And Developments With The Shunts!
I haven’t updated on the Shunt Donation Project as for a few months it’s been nothing but researching World Health Organisation guidelines, NHS guidelines, donation procedures, yadda, yadda, yadda….not exactly scintillating stuff. I needed to get some guidelines in place for both donors and recipients of shunts, to ensure that everyone would be singing from the same hymn sheet and that we would be doing things correctly. Anyhow, I had three lovely donations recently; the first from Lewis who sent me an email saying; ‘I have nine in-date shunts sitting here in my office for you’. Whoop-de-do! I collected them and allocated them to a new organisation I’ve recently started to liaise with, called the Reach Another Foundation. This is a non-profit organisation who work on various projects in developing countries to improve healthcare, education and living conditions.
Marinus Koning, Medical Director of Reach Another Foundation
Marinus Koning, the founder of the company and the Medical Director, was horrified when he first went to Ethiopia to discover that there were only two neurosurgeons for the eighty million people who live there. Through a neurosurgery training programme, that number is slowly rising; I believe there are five or six now….but still! As is often the case in developing countries, babies born with hydrocephalus are not deemed to be emergency cases and are pushed right to the back of any neurosurgical list. So of course, by the time they are finally dealt with, many have died and for the vast majority, treatment is not possible. Marinus had indicated on his website that a severe shortage of shunts was also a primary factor, which is why I offered him the nine which Lewis had got for us. He jumped at the chance and so I was able to put the first proper procedures in place, using our guidelines, signed statements and reports to ensure that no fraud can take place and that the shunts cannot be sold on for profit (given that they are worth hundreds of pounds, sometimes thousands). I had no concerns of Marinus selling them on the black market but it’s good to ward against such possibilities. So on Saturday just gone, I travelled to London with my Mum (girly day out) to meet up with Ciara Baxter, a volunteer for Reach Another Foundation who is flying out to Ethiopia in two weeks. It was really good to meet her; after all the endless faceless emails between myself, donors and recipients, it is a refreshing change to meet someone in the flesh! She was lovely and we had a good chat about the situation in Ethiopia and how we might be able to continue to help the situation. So I passed the shunts over and now they are on their way to Ethiopia and some waiting children. Marinus is very interested in joining forces with us to see what we can do together to improve things there so I am meeting with Lewis next week and then ‘Skyping’ with Marinus after that to get to hopefully get some plans in place. I shall keep you posted!
The second lovely donation I received was from Sophysa, the largest European shunt manufacturer.
Fantabulous shunts from Sophysa
I have been in touch with them for some time and have my very own ‘Ambassador’ there called Mohamed! He is a lovely man, very willing to help in whatever way he can. He was meant to send some shunts last year but then I not-very-helpfully fell ill so he sent them to me last month; a big shiny box of new, in-date shunts! These I have allocated to BethanyKids in Kenya as they were due to get some Codman donations last year but that unfortunately fell through. It’s very interesting doing these donations in terms of encountering enough hurdles to warrant an Olympic event. Although we are doing nothing illegal, red tape and high levels of potential fraud mean that we have to be a) very imaginative and b) rather cloak-and-dagger about the whole thing. Disguising valuable shunts as other invaluable items is now something that comes naturally to me. No wonder these poor people are having a hard time getting the treatment they need; not only are the governments not investing in their care, even donations from charities are often not even reaching them.
The final donation I had was from Adam Zeller, yet another lovely man who put me in touch with Mohamed. Adam works for a company called Fannin and they sent us some fantastic valves. No catheters but getting hold of catheters is not actually that difficult, so we should be able to send them out as full shunt kits. I don’t yet know where these will go. I have stated in the guidelines for donors which Lewis and I send out that all costs for postage are covered by myself. All three of these donors have refused to let me pay and Sophysa asked that the cost be instead donated to BethanyKids rather than go back to them.
All these donations from people who, frankly, have very full inboxes and busy lives, make me realise that it is actually rather simple to do this; you just have to be passionate enough about it. The donations which have fallen through have always had an air of ‘yes, sounds like a great idea but really busy at the moment’ with promises of donations and then nothing coming of them. The donations which have come through have just flowed, no problems, no barriers and no ‘gentle reminders’ needed from me! All the donors and the recipients have a real drive to get this done but with no fanfare or drama. They just get on with it and to heck with the extra workload. That’s why it works.
Now if only we could have the same success with the governments!! The Vietnam proposal looks as though it’s going to have to be abandoned for now; it has nothing to do with a change of heart or lack of determination. Lack of key contacts is the main cause, plus the fact that getting any information out of Vietnam is like getting blood out of a stone; it’s been exhausting and very frustrating and I’ve been working hard to try and make this happen but with limited contacts and no means of getting out there myself (I can’t fly due to pressure issues in my head), it seems more worthwhile to try this proposal with another country first, where I have more people helping me and therefore far more contacts! Whilst I’ve got Marinus so enthusiastic to make permanent change, I think the most appropriate thing to do is run with Ethiopia and see if a proposal to the Ethiopian Health Ministry could be a good idea. If that works, I can try again with Vietnam and maybe already having a successful pitch under my belt will help persuade Vietnam that if Ethiopia can do it, so can they. Ethiopia is a poor country so doesn’t necessarily have the money to fling at treating children with a fatal condition, whereas the Vietnam economy is very strong; it’s more a case of a lazy government by the look of things there! Anyway. Chats with Lewis and Marinus this week, hurrah! Action. Planning ahead. Working with people who want to help you bring about proper, long-term change. It feels great.
Oh by the way, I am looking into setting up a charity to raise money for this project; at the moment it’s not costing me too much money but I’m hoping that a proper established charity will help propel thing forwards. Name suggestions are very welcome!
THIS POST CONTAINS IMAGES OF UNTREATED HYDROCEPHALUS CASES IN CHILDREN WHICH YOU MAY FIND A BIT UPSETTING SO IT’S UP TO YOU IF YOU READ IT; JUST WANTED TO WARN YOU FIRST!
If you’ve read this blog before, you’ll know that I have hydrocephalus and that I have a shunt which basically, keeps me alive. You’ll also know that during my surgery-free eighteen months I’ve been working on a project to get shunts sent to countries which are lacking in treatment for hydrocephalus, which is a massive problem and a particularly cruel one as it affects mainly babies and children only; simply because if left untreated, they die before adulthood. I am currently awaiting surgery next week for my own shunt which is malfunctioning so have been unable to work on this for over a month now but I hope to be back on it soon. What has become very apparent to me since I started work on this is the restrictions we have placed on ourselves to prevent helping other countries, which is totally ironic seeing as the government seems to pride themselves on providing foreign aid. Chucking money at a problem doesn’t always solve it, however and in the case of hydrocephalus treatment, there seems to be a real lack of not only money invested in it but actual motivation to do anything about it. I think it scares health ministries because it’s ‘specialist’; it’s the brain, so it’s scary. There is a fear in some cultures of such a condition; it’s associated with demons and the child is often abandoned as a result of pure fear on the part of its family. There are not many neurosurgeons in affected areas – sometimes none at all – and the shunts needed can be very expensive for poor families and poverty-stricken countries.
Go Vap Orphanage looks after hundreds of children like this – shunts need to be donated due to high costs.
Here is where the UK and any other country in the world which has a good hydrocephalus treatment system in place could help. But I’ve experienced now first-hand the frustrations of not only hospitals and the surgeons in them which want to donate their unused stock to me, but even the shunt manufacturers themselves, due to what are (in my opinion at least) overly-rigorous checks, guidelines to adhere to and restrictions regarding the donation of expired medical products. I appreciate that we need to be careful. I would never want to send out equipment which is faulty, which is damaged or which is dangerous in any way and neither would the neurosurgeon who is helping me on this project. Of course checks need to be made, audits may need to be performed and in some cases, shunts will not be suitable. But the real problem lies with the guidelines issued by the NHS and the World Health Organization (WHO). For instance, point 7 of the WHO Guidelines For Healthcare Equipment Donations reads as follows: ‘There should be no double standard in quality. If the quality of an item is unacceptable in the donor country, it is also unacceptable as a donation‘. Expiry dates mean everything. Once a product is expired in the UK, it cannot be used, in adherence with NHS guidelines. The product may be perfect. It may be useable. There may be absolutely nothing wrong with it. But try sending that product over to the Congo where there is a dying child desperately in need of a shunt, any shunt, and it’ll be stopped at customs. Because we wouldn’t use it in the UK. The fact that we have thousands of brand new, state-of-the-art, shiny shunts available on tap, for free, for anyone who needs one here courtesy of the NHS isn’t taken into consideration in the WHO guidelines. The countries who need these perfect shunts don’t have another option. There is no choice, other than certain, slow, agonising death for the child concerned.
Recently The Sun newspaper covered the story of little Roona Begum from India, who had advanced hydrocephalus; you may have read about it. Two students set up a public campaign to get funding for her surgery, which was performed earlier this year, after pictures of her were circulated widely on the public media.
Roona Begum – a shunt was found for her and surgery was performed.
What I found interesting was reading the many hundreds of comments left by readers under the articles about Roona. It was clear that many of them didn’t even know this condition existed and were up in arms that nothing had been, up until now, done for her. It was fantastic that she was able to have the surgery and is – so far – doing well although many thousands still need to be raised for further surgeries; it was never going to be a quick recovery process with hydrocephalus that far advanced. But the whole story leaves a bad taste in my mouth. Not that Boona got treated – thank God for her and her family that she did – but that she is just one child. One child out of thousands and thousands who was lucky enough to have the spotlight shone on her and as a result get help. This has been going on for years. There are lots more looking exactly as she did. Right now, across the world there are children lying in huts, unable to move, hideous sores on the backs of their heads because of it, in pain with no access to medication to ease it, slowly dying. Just because the media hasn’t covered all their cases doesn’t mean it’s not going on, every day, right this second.
Governments need convincing, guidelines need changing
Once my surgery (surgeries?) is/are over, I shall be cracking on with the proposal for the Vietnamese government which I am working on with Lewis Thorne and Kim Nguyen Browne. Kim is working with the Government side and Lewis and I are putting the proposal together; we are aiming to prove once and for all that both economically and ethically it is absolutely not beneficial to continue to leave these children untreated. The cost of everyday nursing, clothing, food, medications (if there are any) and accommodation for terminal children until they pass away is huge compared to the comparatively minimal cost of a shunt surgery. And if many of the shunts can be donated, recently expired products from the UK, the US, Canada and Europe which have been passed as safe to use, the cost to these governments receiving them will be even less. If this proposal succeeds, we intend to roll it out to other health ministries and governments in developing countries. But the WHO and the NHS may need to be flexible and introduce a bit of wiggle-room regarding their restrictions on expiry dates. At the end of the day, as long as the products have passed some essential checks to ensure their safety and useability, they should be available for donation. They should not get stopped at customs. Codman UK should NOT be questioned on their ethics for wanting to donate expired shunts; this is what is happening there right now, hence the delay in getting the Bactiseal shunts to Kenya – and these are shunt manufacturers who are being challenged!! The only ethics that should be questioned are those of the people wanting to place a block on donation and instead send all the good shunts to UK landfill, thus ensuring that hundreds of children across the world will not get the treatment they deserve.
It’s all very well for people-in-suits to sit at their desks here, in their plush offices, after a nice lunch, and make such decisions. If they were out there, if it was their child, if they had no other option, if there was an offer of help in the form of a donated shunt, they’d take it. You can bet your life they’d take it. This picture features at the beginning and end of this post was kindly offered to me by a very talented photographer, Daniel Cima. You can see more of his amazing work at www.danielcima.com. This image sums up the horror and the pain – both physical and mental – of the children and their families caught up in the nightmare of untreated hydrocephalus. I couldn’t tear myself away from it when I first laid eyes on it. As I sit here and look at this image, my own shunt is failing and therefore I’m looking at it with some real understanding of the pain that child is feeling. Lying down is agony. But I have the reassurance that in a weeks time I will be in hospital and in a couple of weeks I’ll most likely have a new shunt. I have hope. I have a light at the end of the pain tunnel. And God do I feel guilty when I look at that photo. I want to run over there, hand them a shunt and escort them to a surgeon. We have hundreds of shunts here which will not be used. They’ll be thrown away. Please, WHO and NHS, have some sense when we approach you later this year. Sometimes guidelines are helpful and sometimes they spill over into over-cautious and restrictive. Please identify where you need to relax the reins and realise that just because a shunt would not be used here, doesn’t mean that it can not be used elsewhere. If the picture below cannot convince them that things need to change then I don’t know what else we can do.
This is a run-on from the last Diary; it was getting a little long to follow and now I have a treatment plan so I thought it would be best to cover the actual treament/results here, to avoid endless scrolling in the other post!
Thursday Yesterday was a bad day. My head was bad before I went to sleep and I woke up with it feeling just as bad. Nothing helped it and by nine that morning I was starting to think I’d have to go to A&E. I called my neurosurgeons secretary and spoke to her, as this is what the hydrocephalus nurse, Simon, had suggested I do if things got bad. I spoke to her and she told me to go to my GP if possible, given that my local A&E department has not been great at dealing with shunt problems before unless they were real emergencies, like obvious shunt infections. My doctor was great; Dad took me there and she wrote a letter to the hospital whilst we were with her, faxed it over and then called them on the phone. By two that afternoon she called back to say that I was now on the list to be brought in and I’d be hearing from the hospital in a couple of hours, which I did. They have scheduled me in for admittance next Wednesday. It’s a week away but they feel confident from my symptoms that it shouldn’t escalate into an emergency before that time. If it does, I’m to go to A&E and they’ll haul me in from there. I’m having ICP monitoring done first and then, depending on the results from that, a possible second surgery to correct whatever had gone wrong (if anything) with the shunt.
It’s a great relief; I feel I’ve done my bit. I’ve tried to avoid the surgery, have taken care of myself, tried a pressure adjustment, rested and taken it easy and now that none of that has made the slightest bit of difference and if anything, I’ve got worse, it’s time to bring the surgeons in! It’s funny how I was so determined after my thirty-ninth birthday to not have another surgery before my fortieth and now that it looks as though I’ll be having not one, but two surgeries before my fortieth, I’m not bothered in the slightest. That’s because of the work on the shunt project I’ve done this year. I’m so grateful to have access to excellent treatment (free treatment too!) and I have the knowledge that if my shunt has kicked the bucket, I’ll get a brand new one instantly, that it makes any inconvenience aspect pale into insignificance. If anything it’s strengthened my resolve to get back on track with the project as soon as I am well again.
Codman UK contacted me yesterday to say that they hadn’t given up or forgotten but they were now being challenged about the ethics of donating expired equipment to be sent overseas. Tim Coyne, the guy I am dealing with at Codman, feels the same frustration that I do but is determined to see it through. That’s why I feel relaxed about it now; we’re on the same page so it will get done, I know it. But when I get better there is a bigger issue to address; the restricting rules and guidelines which are preventing equipment to be donated and which are effectively contributing to the high death rates overseas need to be looked at and (hopefully) relaxed so donation is a viable option for hospitals, not something staff could get fired for if they participate. But I’ll worry about that when I’m better. For now, I have a date and I have some hope of finding out just exactly what my shunt thinks it’s been playing at all these weeks! That’ll do me for now.
Today is Action Day. Not physical action because I woke up with my head feeling overdrained even before I’d sat upright (hurry back from leave SOON, please Mr Watkins and Simon!). No, it’s a day for Shunt Project Action. I’ve not been able to do anything on this for about a month now due to my own shunt playing up and I’ve been rather astonished at how apparent it’s become that if I don’t do anything about this, nothing is going to happen. I sent reminder emails a month ago to the two main shunt manufacturers who have both been helping me on this; Codman UK (who offered the forty Bactiseal shunts for Kenya) and Medtronic (who I met with at Great Ormond Street and who got very excited about what I was doing, offering support, public profiles, access to their overseas distributors surplus shunt stocks – all in all a very positive response). I’ve heard nothing back from either of them since. I know that what I’m asking of companies is going to add to their workloads, plus I’m not paying them, plus it’s urgent – but it is ultimately their choice as to whether they get involved or not. It’s always been important to me to only work on this with people who feel as strongly about it as I do because there is no money involved; it’s a charitable venture I’m setting up so parties involved have to be driven by passion and determination and not financial reward. Both these companies volunteered more than enthusiastically to be involved and have been kind and generous with their offers. But now I send an enquiry for an update and any issues and I get a tumbleweed back. With Codman I thought we were nearly there; they’d needed a hand-written letter from the charity in Kenya I’m sending the shunts to (BethanyKids), so they got on with that, airmailed the letter to me and I couriered it to Codman offices in Leeds where it was signed for. I was told it just needed to go through a charity review and then the shunts would be ready for collection. This was in July and it’s now September and not only do I not know what stage this ‘review’ has got to, I’m no longer even getting a reply to my enquiry. I feel I shouldn’t be frustrated; they’re probably just busy, they’ll probably get back to me…but I do feel frustrated. I have a surgeon in Kenya patiently waiting on these shunts and children needing them right NOW and I don’t know what to tell him because now I’m not sure if Codman have just dropped the ball and it’s not going to happen. If a problem’s arisen their end, then fine but I need to know what’s going on. Same with Medtronic. The last I heard was that they were ‘in talks with Head Office’; sounds good. But no word since I emailed them a ‘so where are we at?’ email a month ago. I wish I was well enough to go in person to their offices and have a meeting with them; meetings face-to-face are so much more productive and gain momentum. My confidence in approaching surgeons and manufacturers is fine. Chasing them up, however, can literally bring me out in a sweat. I hate it. I have a lovely friend, Steve, who is Project Manager for the government (transport department – he is hardly a fan of the Coalition but sees his role as being the one to ‘talk some sense into them’) and he’s offered to help me whilst I’m poorly. Hurrah for Steve. He has contacts galore within the government (I told you I still intended to get hold of Jeremy Hunt regarding the ridiculous NHS ‘oh-it’s-a-week-out-of-date-so-let’s-just-bin-it’ rules regarding expired medical equipment in this country) and Steve said that chasing up non-fulfilled promises made by major companies is the mainstay of his job. So I am confident that after a couple of meetings with him, Codman and Medtronic will be back on the ball and I’ll have acquired new skills in ensuring that communications are consistent and productive. There are children waiting to be shunted and I am not waiting anymore. I can’t wait to get better because that will be weeks, if not months. I need to get back on this right now. With a little help from Steve. Hurrah for Steve. Hurrah, hurrah.
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).
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.
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!
I’m knackered. It’s hot (hottest day of the year apparently which, going by how low and below-average the temperatures have been so far this year, isn’t actually much of an achievement) and I’ve just returned from London. I know I need to update you all on what’s been going on and I’m very aware that it’s been a while but so much has happened that it’s literally been a case of not being able to find the time to sit down and write a lengthy post on all that’s happened. I am yet to master the art of the short-but-sweet post, as you will no doubt have noticed if you’ve been following this blog. Since my last post, Four Fab Things have happened and all of them have enabled me to make great progress. And here they are:
Fab Thing Number One
The last time I posted I had just had the three Medtronic shunts donated for Vietnam and was waiting on forty Bactiseal shunts to come from Codman so I could send them to Kenya. The Bactiseals are actually the ‘tubing-only’ bit of a shunt, without the valve bit which regulates pressure. At first I wasn’t sure if they would be able to use ‘tubing only’ but as it turned out it was perfect, because in Kenya they are having specific problems with the tubing-only parts of the cheap shunts they have to use! A shunt-match made in Heaven. Since then there has been a lot of to-ing and fro-ing with Codman (not in a bad way; just establishing what quality measures they need to put in place and what I need to do to meet those measures) and this week we finalised that; they need a printed letter from the neurosurgeon which Mr Albright has written, signed and sent off to me. So as soon as the letter arrives, I’m sending that (recorded delivery!!) to Codman who can then release the shunts to me – and off to Kenya they’ll finally go. I knew when I started this that it would be a slow process once the formalities came into the picture but now we have a procedure established, I can request the letters from the shunt recipients earlier and get the whole process running a lot quicker when Codman next have shunts to donate. So the letter is on its way, the shunts will soon be on their way and Codman and I have an quality procedure in place. Codman box – tick!
Fab Thing Number Two
A couple of weeks ago I received an email response to a general ‘can you help me?’ email I’d sent out to a couple of neurosurgeons about six weeks earlier. The reply was from Mr Lewis Thorne, consultant neurosurgeon at ‘my’ hospital (haha!), the National in Queen Square. He also works at the Royal Free in London. Lewis had actually operated on me about nine years ago when he was a registrar at that time for Mr Watkins. He had clamped off my shunt to see if I could cope without it as I was overdraining badly at that time so Mr Watkins had thought that there might be an outside chance my hydrocephalus had resolved itself and my brain was draining the fluid as well as the shunt, hence the very low pressures I was experiencing. Lewis was great, very kind, friendly and reassuring. Unfortunately having my shunt clamped off turned out to be one of the most hideous experiences of my life as far as hydrocephalus goes (in case you’re wondering, the most hideous experience was shunt infection – both of them). It wasn’t Lewis’ fault that it was so awful though, so I let him off. A couple of days later Lewis came to my bedside and gave me the wondrous news that he’d be unclamping my shunt first thing in the morning as the pressures were going into the high thirties by this time – they should be a maximum of about fifteen. No news has ever been as gratefully received in the history of the world; even Archangel Gabriel and his announcement of the birth of Jesus received a very muted response compared to my reaction to my upcoming shunt-unclamping. After that I didn’t see Lewis at all and assumed he’d left the hospital for pastures new. He had, initially, but returned recently. I found him whilst Googling ‘information about shunts’ one evening. I knew I needed to update myself on the different types of shunt available now so I knew which types would treat different cases of hydrocephalus – it’s not a ‘one-size-fits-all’ in the shunt world! Amongst the results was a link to a lecture that had been given at a neurological institute entitled ‘Everything You Need To Know About Shunts!’. Unfortunately it had been given in 2011 so I was more than a little late. But I pounced on it and was amazed to see that the person who had given the lecture was Lewis Thorne. If he knew everything there was to know about shunts, he was my man! So I’d emailed him back in April and had almost forgotten about it what with everything else that was going on until he replied, with an apology for being late in doing so, saying that he was very interested in my project and would love to help if he could. Result! I arranged to meet with him at his office for a chat and that took place last Wednesday. When I told Mum I’d be meeting with him, she said, ‘does he remember you, do you think?’. I had wondered myself, until I noted that he had begun his email to me ‘Dear Mr Adams’. Clearly he didn’t remember me. I did actually (gently) correct him on that and informed him that I am in fact female, to avoid a bit of confusion – and possible embarrassment – when we did meet, which he was absolutely fine with. I was surprised how nervous I was about the meeting; I had a neurosurgeon actively interested and offering help. I didn’t want to screw it up so found myself swotting as though for an exam on what I’d done so far! Needless to say, I shouldn’t have worried. When I arrived, Lewis was finishing a meeting with some doctors but on seeing me he literally smacked his hand to his forehead and said ‘Jordan! I should have known I’d recognise you as soon as I saw you!’ and asked me to wait in the strangest waiting room I’ve ever sat in. It was full of, er….skulls.
I’m hoping these aren’t previous patients from the National….
Not a magazine or a fish tank in sight. I had to resist an overwhelming urge to play around with them all. Luckily Lewis came in to get me before I had a chance to get my hands on them and rearrange them into the ‘conversations at a bus stop’ scenario I had in mind.
My meeting with Lewis was the most uplifting part of my work on this project so far. I had honestly thought he might offer me some much-needed advice, or give me a couple of contacts but he went above and beyond this. I was glad I’d swotted up though because everything was fresh in my mind and we were able to have a pretty lengthy and detailed discussion on options and plans. He said that this is a cause close to his heart as he had been out to sub-Saharan Africa a few years ago, taking some medical equipment to donate to charities and due to charity politics hadn’t been able to give what he had taken out there. He has ideas for reducing the costs of surgeries generally and also alternative uses of shunt treatments – I can’t go into everything now because a) it’s in the early stages and b) it’s too medical – he would have to explain it properly! Having him on board is so fantastic and such a relief, I can’t begin to describe it. I now have someone who seems as passionate about this as I am and who I can run all the questions I previously had no answers to by. He inspected the donated shunts from Medtronic (as they’re expired) and pronounced them ‘absolutely perfect!’. So we’re working together on producing a ‘business plan’ to present to the Vietnamese government and show them that the surgeries can be and are worth investing in both economically and – most importantly – to ease the suffering of the children. The cost to the government for nursing these untreated children for years until they die is most likely way greater than the cost of cheap but effective shunt surgeries using effective equipment. We are both aware that persuading a communist government who are currently heading down the US-based system of insurance health care is not going to be simple. Lewis wants to get something published as that will carry a great deal more weight. Once we have that in place we can roll it out to more governments who may need persuasion that shunting children is a very worthwhile and very necessary exercise. He also has access to spare shunts which he is sourcing this very moment. I am starting to wonder what the heck I would have done without him now. I had, as I said to him in our meeting, reached the limit of how far I could go alone. All the research in the world won’t change the fact that I am a mere patient who has neither the expertise nor the contacts medically to make sure I’m making the correct shunt decisions. I have expertise in how it feels to have hydrocephalus but that, and a lot of passion concerning the issue, is about as far as it goes! The fact that Lewis is so busy as a surgeon and is still happy to help and give me his time, free of charge, with the support and encouragement that he’s already shown in just a couple of weeks, has made me feel for the first time that we can truly make a difference to untreated children with hydrocephalus across the world. Power in numbers!
Fab Thing Number Three
The same day as my meeting with Lewis, I managed – quite by chance – to secure an impromptu meeting with the surgical manager at Medtronic, the very company who had kindly donated the three shunt systems for Vietnam. Louise (the lady in question) just happened to be at a hospital I was visiting to discuss shunt donations with. The person I was speaking with about their shunts suddenly broke off with a ‘Eureka!’ moment as she remembered that Louise just happened to be in the building that very day and would I like to meet with her? Would I!! Louise was in surgery, overseeing the use of a new surgical drill Medtronic had just produced so she came out to meet me, fully ‘scrubbed up’ in her blue theatre outfit. She was very enthusiastic about the project, the fact that I already had three Medtronic shunts and even more about the fact that I myself have a shunt. This is a detail that does seem to ‘wow’ the medical personnel I come into contact with. To me it’s no great shakes; I have a shunt. And yes, this is why I’m doing this project, because I know how hideous hydrocephalus can be. But sometimes I think they half-expect people with shunts to be ill-looking or not as energetic maybe as I can come across sometimes. I can sort of understand this, given that they are seeing people in hospital most of the time when they’re ill and either pre or post-surgery! I feel like a shunt commercial; ‘Yes! You too can look and act like this if your shunt works properly! Because you’re worth it!’. Anyway, Louise was fantastic and promised to look at the fundraising side of things as well as establishing some proper support from Medtronics overseas suppliers as they’ll have greater numbers of shunts to spare. And she was as good as her word; a few days later I received an email from Louise saying that she’d loved meeting me and she was currently talking to Head Office to get some plans in place. All from a chance five-minute meeting outside Theatre Two!
Fab Thing Number Four
Last but oh-so-not-least, I finally got to meet with Kim Nguyen Browne yesterday, from Go Vap Orphanage!
Kim looking happy with two of the shunts!
We met in London so I could hand over the Medtronic shunts so they can get back to Vietnam and be used. Meeting Kim was like meeting a long-lost friend, although we’ve only ever spoken on the telephone up until now. She, like all the others I have met and who are now involved in the project I only started in April, has an absolute heart of gold when it comes to helping others and I don’t give a toss how sappy that may sound. The work she’s done to help these children already and the contacts she’s established with other charities and organizations helping her is impressive to say the least. She was overjoyed to get the shunts and our meeting was far too brief for my liking but hopefully I may be able to meet her for a longer lunch when I next meet with Lewis or on another of my now-frequent trips to London. She was so helpful in what we discussed and she said she will post pictures of the children who actually receive these shunts and allow me to follow their progress so of course when that happens I will share with you! It will be so amazing to see the faces of the children who will (fingers crossed) soon be out of pain thanks to these shunts. And I cannot stress enough how good it felt to hand the shunts over to her. I thought that moment would take about six or seven months to come about, not two! Kim uses the following as the motto for the Vietnam Volunteer Network she manages and the work they do at Go Vap and all the other orphanages they help; ‘Together we can make a difference’. I’ve learned this lesson more than any other since I started. There was always going to be a ceiling on how far I could get alone. Now with Lewis, Kim, Louise, Mr Mallucci, Tim and Louisa at Codman and every single other person who has helped/shown an interest/given me a contact/urged me to keep going, I’m starting to see that this project now does have, and will continue to grow, LEGS! My determination to get changes made in both our healthcare system (STOP throwing useable products into landfill sites and send them to where they can be used to save lives) and overseas (don’t brush hydrocephalus under the carpet any more when seventy-nine percent of new cases this year will be in developing countries) is absolutely renewed. Not that it went anywhere; it was just wondering which path to take next. Now I have a path. With friends.
If you’ve just jumped in, you can read more about my Shunt Donation Project (no. 6 on the List)here.
And if you’re wondering what this ‘F-List’ I keep banging on about is, you can read about thathere.
Yep – I have shunts. Three Medtronic shunts – the whole system (valve bit which goes in your head, reservoir bit and all the tubing for the rest of the body). And a manual. They’re actually sitting on my kitchen worktop and I can’t quite get my head around the fact that only seven weeks after I started to try and get this off the ground, I actually have some life-saving equipment.
First three shunts. If this is how happy I am with three, what am I going to be like when the other forty arrive??
These first shunts were donated by a very kind, very helpful and very supportive lady from a hospital. I said to her that collecting them on Wednesday made me feel happier than a seven year-old on Christmas morning. As if that wasn’t enough, the forty shunts from Codman have passed their audit and are on their way! I don’t usually whoop but, seriously – whoop!
It’s been very interesting journey so far. I honestly expected to be faced with lots of ‘we know you mean well but here are the problems and reasons why you should maybe drop it’ conversations from hospital professionals. Not because I think they’re mean or negative or anything like that but because I had no clue about what limitations I might encounter, no idea about hospital policies regarding donating unused equipment and no inkling of whether I would be able to persuade them that this was worth doing. I couldn’t have been further off the mark. All I’ve had is support, help, encouragement and generosity. It’s heartwarming. To think that this is only after the first two hospitals have responded is a good sign. My initial plan to hit as many as I could at once I had to re-think as it was simply too many names/emails/phone numbers/different stages of development for my shunted brain to keep up with. This system is working better: choose a couple of hospitals and then hassle the hell out of them until they submit! (Kidding).
So now I need to get these shunts packed and off to their rightful owners; children currently lying in pain overseas. Quicker the better; I shall update you soon. To everyone who has helped and/or sent supportive comments so far, a MAHOOOSIVE thank you. Let’s keep going, eh!!