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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

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

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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.

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.

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.

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!

Shunt Donation Project – latest update (and it’s all good)

May 21, 2013

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 that here.

The last two weeks have been rather busy regarding the shunt donation; lots of reading, lots of phoning medical secretaries to be passed on to the relevant people to speak to and lots of  taking deep breaths and trusting that it will all work out just fine in the long run.  Generally the feedback it good; everyone I speak to seems to think it’s a good idea with huge potential and is willing to help where they can.  To say that this is heartwarming would be an understatement.  More than anything though, it’s encouraging and it keeps me focused.  So here’s an update on where I’m at:
I had contacted both my neurosurgeon, Mr Watkins and Simon, the specialist hydrocephalus nurse who is the first point of contact (he’s the go-between between Mr Watkins and his patients) to let them know what I was up to.  I didn’t actually expect to hear back from Mr Watkins himself as he’s so busy with surgeries, clinics, conferences and lectures but Simon got back to me straight away with encouraging words and a heads-up about the forty shunts donated by Codman.  They’re Bactiseal, which means it’s just the catheter part (the tubing which runs down the body) without the valve attached.  When I first read this, I felt like banging my head against the wall but then once I stopped panicking that the whole batch would be useless, I remembered that the surgeons in Kenya are specifically having problems with the tubing of the cheap shunts they are using.  They might be able to use them.  The actual contact for Codman hadn’t been responding to the couple of messages I had left so I must admit to having a couple of fraught days full of worry.  What if Codman changed their minds or just didn’t respond because they’re too busy?  What if the shunts would actually be useless? ‘What if’ should be banned from peoples’ thoughts.  It’s a pointless and very negative way of thinking because it focuses on nothing but speculation, rather than action.  I could speculate for the next ten years about how successful this little venture might be but if I don’t actually do anything about it, it will remain just an idea and not an active project.  Having spent the last thirteen years speculating about what I would want to do once out of hospital long enough to actually put my ideas into action, having worrisome ‘what if’ days kind of flies in the face of any kind of progress.  So, along with Gloom and Doom, ‘what if’ is , from this day forth, banished.
Of course, I needn’t have worried.  Louisa, the lovely lady helping me at Codman, called that very day, apologising profusely because she’d been on holiday and had forgotten to tell me.  This is another reason I am consigning ‘what if’ to Room 101; it’s totally unfair to the lovely, professional people trying to help me out who would never just not respond because they’re too busy.  It may take them some time to get back to me, but they do get back to me.  She said that her manager, who was ‘very enthusiastic’ about the idea of actually putting their otherwise discarded shunts to good use, had decided to put the forty shunts promised to me through a final rigorous audit to ensure absolutely that they’re safe to be used by the surgeons they’re going to.  Kind man.  This happened (I believe) last Thursday so Louisa felt I should receive them sometime this week.  I was going to go up in person to collect them from Manchester but seeing as I am in Kingston near Lewes, the fare alone was in the region of £100.  Considering the fact that the only funding I have for this project is from my own pocket, I have to be realistic about costs.  I can only work part-time because of my condition (full-time work: been there, done that, ended up in hospital from overdoing it) so my finances, although very carefully managed, are – shall we say – limited?  Louisa said they’d be more than happy to courier them down to me and that when I’m up Manchester-way in the future (which I will be later this year) to say hello then.  Makes sense.  Especially as I have no idea yet how much it’s going to cost to fly forty shunts by recorded delivery to Kenya.  So at the end of that day I felt a little more on track.  Especially when I received a response from Mr Albright in Kenya (the neurosurgeon wanting the shunts) to my email explaining exactly what he’d be getting and could he use them?  It was a resounding yes.  Hurrah!
So the next morning I felt a little bouncy – like Tigger – as I went about my day.  I decided to walk into Lewes to do my banking, rather than cycle, as it was such a beautiful morning.

Me when anyone tells me they've got spare shunts to pass on.

Me when anyone tells me they’ve got spare shunts to pass on.

The walk is only a mile and a half but it takes me past fields, the newborn lambs (growing quickly!) which I had helped bottle-feed with my friends’ children at the farm behind my house a few weeks earlier and is perfect for either listening to inspirational music through one’s headphones or listening to the soundtrack of nature (especially nice when it’s raining; you can’t beat rain in the  countryside for the sounds and smells it produces).  Today however, I chose headphone music.  Not the Tigger theme tune, I feel I should add.  Just as I was striding along, fresh air in my nostrils and not particularly caring who could hear me belting out ‘Don’t Stop Me Now’ by Queen (you may laugh – but it’s perfect for motivation, energy and a general bloody good singalong), my mobile started ringing.  Putting the song on hold, I answered the call (from a ‘Private’ number).  It was Kat, a hydrocephalus specialist nurse (just like Simon!) from Birmingham Children’s Hospital.  I had emailed her about two weeks previously and heard nothing back so I had got on with chasing other avenues.  It has become apparent that neurosurgical staff take about two weeks to get back to me.  A good guage to go by.  Anyway, like Louisa, she was unnecessarily apologetic about the delay in her response and proceeded to tell me what a fantastic idea she thought this project was.  ‘Why has nobody thought of this before?’.  I am not a hundred percent sure that nobody has done this before actually.  I just couldn’t find any evidence of it online and so far all the neuro peeps I’ve spoken to have certainly never partaken in any scheme like it.  Kat was so enthusiastic, she could have been a fellow Tigger.  She said that she wanted to present the idea in full to a meeting of neurusurgeons and neurosurgical teams which takes place in Birmingham once every so often; the next one is at the end of June.  She asked me to forward a full outline in an email for her to read over so she can get some sort of report together.  I was very touched by her response to what had been a rather desperate-sounding email two weeks earlier.  No one I have spoken to about this has been certain about just how many shunts/valves/catheters they would be able to free up but to be honest at this stage, that’s not so important.  What is important is making people who work in the field aware that shunts are being discarded and for every one that is, an opportunity to save a child in need of a shunt overseas has been missed.  And even if the department I’m directly liaising with doesn’t have any to spare at that moment, they may know of someone who does have some.  They network for me and in doing so open doors which I wouldn’t be able to open alone.  It’s these open doors which may lead to other avenues of help which I may not have even considered yet; ‘it’s not what you know…..’.
So Kat now has a detailed email from myself and I have a renewed energy this week; hopefully by the end of it I’ll have the shunts.  And then I’ll feel things are really starting to get underway.  I’d better tone down the Tigger-esque excitement every time something good happens though.  It could get really irritating.

Shunt Donation Project – I have shunts!!!!

May 2, 2013

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 that here.

Yessir, this is a good day.  A happy day.  This morning I received an email from Conor Mallucci at Alderhey Children’s Hospital (Mr Mallucci is the first neurosurgeon I contacted in this project) saying he had just spoken to a lady at Codman UK and that they had shunts for me.  He said that she would be very happy to speak to me directly and included her contact details.  So I called her immediately (Loiusa Doherty; very helpful, very friendly, very keen to assist).  She said she has a rare situation of a hospital having ordered too many shunts and that there are forty she is due to collect next week which I am welcome to have.  They are ‘Bactiseal’ shunts, which mean that they release antibiotics once implanted in the child for the first crucial month when infection rates are at their highest, which will be imperative in these countries where infection plays such a large and troublesome role in post-operative complications.  Needless to say, I couldn’t thank her nor Mr Mallucci enough.  I was bordering on sounding gushy so I restrained myself after thanking each about three times.  To Codman, it’s just some shunts they won’t use.  To me, it’s a child being saved from a horrible death with every donated shunt.  Now I just need to arrange collecting them from Codman the week after next and after that I am going to meet with Kim Nguyen Browne from the Vietnam Volunteer Network to personally give her some of the shunts.  The others I shall be sending to Mr Alrbright at BethanyKids in Kijabe.  I’ve had to work out how many go give each facility in relation to how many children they have which are in need of the shunts which has been harder to do but judging from what both Kim and Mr Albright have informed me about the situations of each facility, I think I shall be sending fifteen shunts to Go Vap Orphanage in Vietnam and the remaining twenty-five to Kijabe in Kenya.  I shall update more when I’ve finalised the details; I just wanted to quickly share the good news!

Shunt Donation Project – Hassling busy neurosurgeons; feel-good-factor, 0/10. Necessity; 10/10

April 26, 2013

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 that here.

They probably are the busiest people in the country.  People don’t conveniently stop being ill at midday so you can go for lunch.  They don’t necessarily always stabilise post-surgery so you can have a nice sit down and a cuppa after performing a long and challenging operation.  Besides operating, they have clinic days each week, training days working with their registrars, lectures to give, conferences to attend and of course are on-call a few days a week.  Neurosurgeons are busy.  So when I need to chase them up regarding a job which I want them to do (for free) and which they agreed to out of pure enthusiasm, support and kindness…well, it’s pretty hard to do.  Of course, this is new to me.  I have spent the last thirteen years liaising with neurosurgeons on a very regular basis.  But this time I’m not a patient.  This time I want them to do me a different kind of a favour.  And I want them to get on with it, like, now.  I think the trick I’m going to try is contacting as many people at one time as I possibly can, rather than one at a time and seeing how each phone call/email progresses.  The odds are that one out of the many will answer pretty quickly and by the time I’ve finished establishing things with them, others will have responded too – so I won’t have to chase anyone up.  That’s my plan and, by jove, I am not afraid to try it.  Starting tomorrow.  The surgeon I felt I had to chase up today was, naturally, just very busy and has been quietly getting on with what I asked of him and is now simply waiting on delivery of a batch of shunts from Codman, which he is then going to forward to me.  He thought he’d responded, I hadn’t been a hundred per-cent sure if I was due an email from him and thus a ‘gentle reminder’ email was sent.  It actually probably was a gentle reminder from his point of view; to me I was hassling the Hell out of him and it felt awful.  He was as polite and kind as before though.  I need to let go of the worry a bit I suppose; it’s just that to me this can’t be done quickly enough.  There are children needing shunts and I can get hold of some and until I do, they are lying there with high pressure.  Untreated, relentless high intracranial pressure.  I know how high pressure feels and that’s why I get panicky if things aren’t moving as fast as I’d like, because high pressure makes you panic.  It’s a feeling like no other, worse than anything I’ve ever experienced before in my entire life and it is dangerous, hence the panic.  However, panicking is not going to help them, me or the kindly neurosurgeons, so I have to stop it.  That’s when I go for a run.  I managed to run for forty-five minutes today until I felt more relaxed.  I say ‘managed to’ because it’s only recently I’ve been able to run again.  Running when you’re having regular brain surgery is a no-no.  Now I can’t function without it.  Running through the village and past the towering hills (noisy with the newborn lambs today) and the scent of the Spring blossoms (budding a bit late due to the long Winter but better-late-than-never) is the best de-stresser.  I highly recommend it.
So…update!  Well, I have been emailing some surgeons currently based in Kenya.  They work for a charity called BethanyKids and provide surgeries and support for a range of conditions including hydrocephalus.  They also have mobile clinics…brilliant.  I swear if I won the lottery I would buy a mobile operating theatre and get it out where it’s needed.

Baby John

Baby John

It’s been interesting reading about this charity as in some cases, the delay in actually performing essential surgeries can sometimes stem from  superstition and fears of witchcraft.  One such case the site focuses on is that of baby John, born with spina bifida, hydrocephalus and kyphosis (a deformed spine).  For three months he was hidden away by his terrified mother until he was discovered by some nuns and the mother was persuaded to bring him to the hospital.  Some of the crucial work BethanyKids does is to work with communities and dispel the myths of witchcraft and curses causing such disabilities and to replace it with truth.   It should probably be obvious that this would happen in some areas, especially in rural communities, but to be honest it hadn’t really occurred to me until I read this.  The surgeon I’ve been liaising with in Kenya, Leland Albright, (here’s a link to his very interesting blog:,was very positive about the prospect of getting hold of some alternative shunts to the models they currently use.  Not all neurosurgeons working in foreign climes are in need of shunts as they are promoting another procedure which treats hydrocephalus called ‘ETV’ – endoscopic third ventriculostomy (cream crackers at the ready folks), which essentially means making a small hole in the floor of the third ventricle (the ventricles are the stretchy areas at the centre of the brain where the CSF – brain fluid – gets trapped when one has hydrocephalus).  Once a hole has been made, the trapped CSF can flow out, thus releasing the dangerous pressure in the brain.

Leland Albright, neurosurgeon for BethanyKids.  Pictured with his wife, Susan.

Leland Albright, neurosurgeon for BethanyKids. Pictured with his wife, Susan.

It’s favoured as a treatment in developing countries as it means a shunt doesn’t have to be used.  Shunts can be very expensive and are not without their problems.  In poverty-ravaged areas, costly corrective surgeries due to blocked/infected/perforated shunts are best avoided.  However, ETV itself has its own complication rate and is not actually suitable for all types of hydrocephalus; sometimes the hole in the third ventricle closes up so a shunt is needed after all.  Not all neurosurgeons in these countries are qualified to do ETV.  So although it is a progressive and intelligent treatment, shunts are still in demand.  In Kenya they are using a certain model of shunt which is produced very cheaply and therefore ideal for use in poor areas.  However, the surgeons seem to be encountering specific problems with these.  I asked Mr Albright to list the problems and he sent a photo of  a baby with a ‘perforation’.  I still can’t make my mind up if what I’m seeing in this picture is actually correct as it’s so awful; the baby is on its back and there is a very prominent area of shunt tubing (under the skin, not broken through) over his chest area.  I thought that was the ‘perforation’.  But then I noticed that the surgeon’s hands were holding the knees of the baby apart and a long, thin white tube was projecting from his bottom.  It struck me that this was in actual fact the perforation; the tubing in the abdominal end had pierced the bowel and was now sticking out of his bottom.  Mr Albright said that it happens ‘often’ as the shunt tubing is poorly made and therefore becomes stiff; this makes it pierce through internal organs whereas a soft shunt bends and moves around with them.  It seems to me that although buying a cheap shunt can be a good thing initially, the costs involved in correcting complications could easily offset the initial saving that was made in buying a cheap shunt to begin with.  There are no guarantees with any shunt or any shunt surgery but perforations happening ‘often’ is not good.  The shunts also underdrain (not letting enough fluid out of the head to suit the child), resulting in the very symptoms the shunt was initially trying to eradicate in the first place including headache, drowsiness, vomiting, double vision and other nasties.  Hearing about these issues only strengthens my resolve to get on with it.  It’s like a virtual kick up the backside.  I can only hope that the neurosurgeons I have to chase don’t see my emails/phone calls/reminders that way – I hope they see them as the ‘gentle nudge’ they are intended to be.

Shunt Donation Project – Latest Update (and the hectic lives of neurosurgeons)

April 19, 2013

If you’ve just jumped in, you can read 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 that here.

Things have been busy so I have fallen a little behind this week in my to-do list.  However, today I am back on track, people!  Yessir!  (Sorry.  I can be a bit hyper in the mornings).   Yesterday I sent a reminder to the secretary of Mr Mallucci; he told me that I would probably need to do that when I first spoke to him as he has such a hectic schedule coming up.  Having spent so many months in the company of neurosurgeons, I do have a good idea of just how hectic they get.  It’s not ‘hectic’ by the majority of peoples’ standards; their ‘hectic’ is enough to make one’s brain go into complete meltdown. When I was scouring neurosurgical trainee forums and chat rooms in my research for my F-List: Number Seven, I found it very interesting to see how many threads addressed the topic of how working as a neurosurgeon would impact on one’s personal life.  It certainly is a hot subject and a genuine and serious concern of those going into the field as it is so completely full on.  I once asked my neurosurgeon how many hours a week he worked on average (he never seems to go home!) and he just laughed.  I ventured a guess; ‘eighty?’.  He laughed again.  Clearly it was more than that, possibly a lot more than that.  So this is why I am acutely aware of how I pitch my Shunt Donation Programme idea to neurosurgeons; they don’t exactly have much free time to get on board with everything that’s suggested to them.  I have to make it sound like a worthwhile, well-researched project which won’t require masses of work on their part.  All I want are interested and eager people; I will do the calling, emailing, travelling, collecting and dropping-off and paperwork.  I will do the background work; I just need them to open the doors that I cannot.

The National Hospital For Neurology & Neurosurgery, Queen Square - the one wot I own.

The National Hospital For Neurology & Neurosurgery, Queen Square – the one wot I own.

So today – neurosurgeons up and down the country are going to get the same email which prompted Mr Mallucci to take part.  I am going to approach two neurosurgeons at my hospital in London.  Sorry – it’s not ‘my’ hospital. I do not own it.  Although I know it so well that I feel I should.  It’s the hospital I attend.  One of them has overseen a major surgery on me before when my neurosurgeon, Mr Watkins, was out of the country (again, he is not ‘my’ neurosurgeon.  He is a free man.  Although I have told him that if he ever emigrated, I would follow him and pitch a tent in his back garden rather than go to someone else).  This neurosurgeon who stood in for Mr Watkins writes his own blog, which really inspired me to do this one.  He is a lovely guy and has a ‘anything is possible’ approach which really shines through in his blog posts.  So I thought he’d appreciate what I am trying to do.  Mr Watkins is absolutely on my list but I think he may be more beneficial in the actual medical side of things, given his devotion to the treatment of hydrocephalus and research in the area.  And as he is the busiest neurosurgeon I’ve ever come across as he travels extensively with his work, I want to have a concrete idea of what I need from him; being vague won’t really get us anywhere.  So for now I am continuing with the surgeons and departments whom I feel will be able to give shunts.  Then I need to start approaching those who might be able to give medical advice and maybe encourage trainees to travel out and give medical assistance to these youngsters.  So, cup of tea and back to work!  I shall update soon!  Thank you all for your encouraging feedback by the way.  Any advice or ideas are always very gratefully received and I appreciate your support.

Shunt Donation Project – REEEEEESULT!

April 12, 2013

If you’ve just jumped in, you can read 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 that here.

Ooooh, I am HAPPY today!  I spoke to Mr Mallucci at Alderhey hospital yesterday (his name is pronounced ‘Mal-ooch-ee’ but I managed to call him Mr ‘Malakee’ in our first conversation.  Oops.  I also managed to call him smack in the middle of a very important board meeting.  Double oops.  This did not, however, put him off talking to me and he was so helpful I couldn’t express my gratitude to him enough.  As you probably know by now, Number Six on my ‘F-List’ (kind-of-bucket-list-but-for-approaching-forty: for the proper name just replace the ‘b’ of ‘bucket’ with an ‘f’ for ‘forty) is a project I’ve been planning during my thirties when I’ve been well enough and actually out of hospital/the operating theatres long enough to plan it.  I want to get children and infants in developing countries where hydrocephalus is a very real – and very ignored – problem, with often next to no facilities or care available to them, treated.  So to start with, I’m trying to set up a regular shunt donation programme from the UK to enable these desperately poor countries to at least have equipment available to them to actually perform the surgeries when neurosurgeons are able to get to them.

The Codman-Hakim valve can be implanted in children and either fixed (so the amount of fluid drained is set permanently) or programmable (the amount of fluid drained can be controlled, as shown in the picture).

The Codman-Hakim valve can be implanted in children and either fixed (so the amount of fluid drained is set permanently) or programmable (the amount of fluid drained can be controlled, as shown in the picture).

Mr Mallucci is a neurosurgeon at Alderhey Children’s Hospital in Liverpool and I sent an email to his secretary a few weeks ago explaining who I was, what I wanted to do and why.  I then asked if he could help in any way.  Turns out that he can.  He told me that he was very keen to get on board and has already spoken to Codman (Codman Hakim is a major supplier of shunt valves in the UK).  He said that Codman, like him, were very keen to participate and sounded very positive about setting up a donation system.  He is speaking to them again (I think today) but said to me to leave it to him and he’ll get a first batch of shunts over to me asap.  If hugs could be given over the telephone, he would have got a bear-sized one.  Finding that first open door is a major step forwards; now that it looks like both Codman and Alderhey Hospital will be on board, it should make it easier to get other neurosurgical units and shunt manufacturers (I have all their details – there is no escape) to participate.  So this weekend I shall be completing my email list of all the other neurosurgical units and surgeons I need to contact and keeping everything crossed that they are as keen as Mr Mallucci and Codman….and if that works then I may actually get to start on Number Seven on my F-List.  Who knows…..but today is a good day.  God bless kindly neurosurgeons and shunt manufacturers.

Shunt Donation Project – Latest Update – a telephone call & a step forwards

April 9, 2013
Kim in the ward at Go Vap Orphanage

Kim in the ward at Go Vap Orphanage

If you’ve just jumped in, you can read 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 that here.

Two days ago I had my first chat with Kim Nguyen Browne, founder of the Vietnam Volunteer Network (VVN). It was so good to have a talk with her about what could possibly be done to help the children with untreated hydrocephalus over there. The situation there sounds even more desperate than I thought it was and has only made me even more grateful (if that were possible) for the treatment and support I get as a hydrocephalus patient in the UK.   As Vietnam is a communist country, the Go Vap Orphanage is government-run although it is primarily funded by donations.  Currently there are about two hundred and fifty children residing there, over ninety percent of whom are handicapped, either mentally, physically, or both.  As far as shunting patients for hydrocephalus goes, the situation is complex.  VVN has a Medical Manager who contacts shunt donors and medical companies for any free material they can offer.  Medtronic, a manufacturer of shunts used for hydrocephalus treatment, recently donated ten shunts to the orphanage.  However, only two of those have been used. The window of opportunity for operating is very small as it depends upon so many different criteria coming together at the same time to enable it to happen.  Kim explained to me as an example that out of, say, twenty-five children who are assessed and presented as being possible patients for shunts, only about eight are selected to have MRI or CT scans to determine the extent of their problems and whether surgery is possible.  Even then, once the results come in, the actual number which can be operated on is greatly reduced as serious complications are often revealed, such as having only half a brain, too much fluid or too small a brain.  So out of that initial group of twenty-five children, only three or four may be operated on.  The rest are left to die naturally – which can unfortunately take years, as in the case of Hien.  Obviously money – or rather, a severe lack of it – plays a huge role in this.   VVN works with ADM Vietnam, a non-profit organisation funded, again, mainly by generous donations, which helps pay for the surgeries on the orphanage children.  They provide free operations and together with donated shunts, this means that the poorest children, often transported from other hospitals, have at least a chance of survival.  The other problem is that neurosurgeons are thin on the ground and only come out to the orphanage once in a while – which may mean that some children who would have been eligible for surgery may literally miss the boat.  If the window for surgery is missed even by a couple of weeks, it can be too late as operating will then pose so many risks due to an accumulation of too much fluid, that the complications and possibility for a bad outcome are significantly raised – and often in these situations the decision is taken to forgo the surgery.
Kim explained to me that in Vietnam, since the war, there has been a prevalent ‘survival of the fittest’ attitude running like a prominent vein throughout its people.  Surgeons will generally only operate on those they feel will make a significant recovery; the other patients are simply washed, fed and watered, but not medically helped.

One of the Go Vap babies with pronounced hydrocephalus

One of the Go Vap babies with pronounced hydrocephalus

Even though these doctors and nurses are efficient at keeping these children clean and fed, they don’t give love; this is given in abundance by the volunteers who spend time with the children, entertaining them, talking and singing to them, giving them massage or simply just sitting by their beds and holding their hands. The stark reality of this being the only love they are likely to receive, having no families, as they slowly die in agony is simply shocking to me in this day and age.  Especially when I saw the wounds recently on the head of Hien, shortly before she died in March.  The link on her name will take you to a video of Hien receiving a massage from a volunteer some years ago.  I may post the photos of her wounds and of her deteriorated state up soon – with a warning first as they are horrible to see – as it is Hien’s story and that of the Go Vap Orphanage which motivated me to act.  Horrible though the images are, they kind of keep me focused on trying to get this situation improved.  I am only relieved to know that this little girl doesn’t have to suffer so badly any more.
So today I am speaking to a neurosurgeon from Alderhey children’s hospital who has kindly agreed to speak to me regarding shunt donation possibilities.  I am sending emails to various neurosurgeons today with some of the information which Kim gave me, to follow up next week once they’ve (hopefully) had a chance to read them.  At this stage I’m hoping just to get a good idea of those hospitals which may be able to donate shunts and also to guage which, if any, neurosurgeons might be interested in taking a look at these scans of the children who are deemed as being ‘inoperable’.  As the hydrocephalus has been caused by chemicals in the food chain, surgeons in this country are unlikely to have seen some of the problems arising, such as ‘literally no brain present’.  It could be that in some cases, the expertise we have in this country could be applied to these patients.  We may have solutions here which are not available there.  That’s when I need to start seeing if my F-List: Number Seven is a possibility.  But that door hasn’t opened yet.  I will update when I’ve spoken to the neurosurgeon.  Fingers crossed people!  By the way, if any medical professionals are reading this and have thoughts/ideas/contacts which might be useful, pretty please send them to me!

Shunt Donation Project – a big challenge ahead

April 5, 2013

If you’ve just jumped in and are wondering what this ‘F-List’ I keep banging on about is, you can read about that here.

You can read about how the project written about below is now developing here.

Number Six: Set up a shunt donation programme from the UK to aid countries where treatment is limited or non-existent.
Number six in my list is the most important one to me.  It’s also the reason that my list is rather short, compared to many Bucket Lists and Must-Do-Before-I-Change-My-Mind lists out there.  Number Six is going to be a long project and I don’t expect to have it fully completed and established by the time I’m forty.  I want it to be set-up and running but I expect there to still be some teething problems!  The fact that I intend to have another ‘F-List’ next decade (F for Fifty, natch) is the other reason for my F-List being short-ish; I’m doing my life goals in bursts, head-permitting (a little like the weather).  Back to Number Six – being able to help disadvantaged countries in their treatment of hydrocephalus is a goal that I’ve held since about four years after I was diagnosed.  I wish in a way I had wanted to do this before four years in but I was finding adjusting to life with hydrocephalus pretty hard at that time and was in a bit of a mess to be honest.  The hospital stays were intense and scary and pretty relentless.  But in retrospect I think it’s a good thing that I found it so hard to get through; if it had been a breeze, I probably wouldn’t have felt so compelled to get something done in countries which have limited or no treatment.  Knowing now what rising pressure in the brain feels like, the panic it creates, the horrible symptoms and completely alien feelings, the thought of children going through it with no option of treatment is simply incomprehensible to me.   So around 2005-2006 I started to make notes on what I wanted to do someday when I was well enough to really apply myself to the cause.  There was a lot of reading and research to be done and it would take a long time, I knew – but I never abandoned the idea.
The Go Vap Orphanage
I first came across the Go Vap Orphanage on YouTube; I was looking for videos of anything hydrocephalus-related.  I was having another relentless barrage of problems with the shunt; I was overdraining terribly (see more under the ‘Hydrocephalus’ category for overdraining symptoms and experiences) and was in hospital far more than I was out.

One of the volunteers at Go Vap Orphanage

One of the volunteers at Go Vap Orphanage

  Treatment was slow and cautious due to the complexities of my particular situation and so I was ill for a long time, unable to do much at all apart from lie flat on the floor for most of the day.  As I scrolled through the videos (many of them surgical ones aimed at medical students which wasn’t really what I was after; I wanted to watch people talking about their experiences of having the condition, to see if anyone had severe overdrainage so I could maybe get some advice), I saw an image which stopped me in my tracks.  It was of what looked like a hospital ward, but was obviously not one from this country.  I clicked on the image to watch the short video.  What I saw in that 90 seconds changed my life forever; I knew at that very point that I would not – and could not – ignore the issue and that even if it took years, I would do my utmost to get a shunt donation programme together. Go Vap Orphanage provides food, housing, and education to about 250 children in the outskirts of Ho Chi Minh City.  Many of the children are born disabled as a result of Agent Orange, a toxic defoliant containing dioxin which was sprayed by the U.S. over Vietnam as part of its herbicidal warfare programme called ‘Operation Ranch Hand’. The companies who manufactured Agent Orange, as well as the U.S. government actually knew about the cancers & adverse health effects but did not even warn the soldiers who sprayed the defoliant.  It entered the food chain and subsequently, hundreds of children are still being born today with birth defects and disabilities, hydrocephalus being one of the most prevalent.

Kim Nguyen Browne, founder of the Vietnam Volunteer Network, with one of the beautiful children she helps

Kim Nguyen Browne, founder of the Vietnam Volunteer Network, with one of the beautiful children she helps

Kim Nguyen Browne, the woman in the video, was herself adopted from Go Vap Orphanage and, wanting to give back to the place which had cared for her as a baby, set up the Vietnam Volunteer Network in 2008 to enable volunteers to help the children affected.  Today it is thriving, with regular donations, some support from medical companies and healthcare professionals and volunteers flying in from all over the world.  But it is still a desperate situation as far as hydrocephalus is concerned; the video I had watched had been the ‘terminal ward’ at the orphanage; as the video camera panned around the room, the scene was horribly bleak.  Countless iron cots with dying children.  ‘Too late’; the terrible words which are just unbearable to hear when faced with a picture like that.  Here is a link to the video I mentioned and which I watched; Kim is in it: The Terminal Ward At Go Vap Orphanage.

The first ‘Great Plan’ – which I’ve currently shelved!
My first plan was to see if it would be possible to set up a regular training scheme for UK-based neurosurgical trainees and/or registrars to assist in existing neurosurgery training programmes in countries such as Uganda and Haiti. The benefit of spending so much time in hospital is that you get to chat to all the medical staff at length about their backgrounds.  I quickly discovered after many stays at the National that neurosurgical training placements were difficult to get (I think there are only thirty-four neurosurgical units in the UK).  In developing countries there are often no trained neurosurgical staff to carry out pre-operative and post-operative assessments, initial assessments of potential patients and to assist in theatre.  Of course, the optimum goal is to have neurosurgeons trained in their own countries to add to and develop the existing health infrastructures which already exist.    However, training takes years, funding is short and facilities are in even shorter supply.  So I thought; well, why not try to get a regular rota of UK trainees to work six-month placements overseas before returning to the UK to continue their studies.  Once a group has returned, the next can fly out.  It sounds so simple, doesn’t it?  And if it were that simple, it would have been set up already.  However, I couldn’t find any evidence of established programmes like this; CURE Hydrocephalus in Uganda has medical volunteers flying out but it is on an  basis with no consistency.

Another inspirational individual; Benjamin Warf and some of his patients in Uganda.

Another inspirational individual; Benjamin Warf and some of his patients in Uganda.

I contacted Dr Benjamin Warf, who heads up the neurosurgeon training programme in Uganda and put my ideas to him.  He liked them, said they were good – but that logistically the situation was very difficult.  He suggested I find out first if registrars and trainees would want to do it and if their medical facilities would be prepared to let them go and then return.  I contacted another neurosurgeon, Mr Ellenborgen.  He said the same thing; great ideas, noble ideas; a logistical headache.   So following Mr Warf’s advice, I started lurking on medical student forums, became a member of various chat rooms and read and read and read….and it quickly became obvious that this was a biiiiiiiig job.  Too big to even know where to begin with it.  So many things needed to be addressed; funding, accommodation, training facilities, sufficient patient numbers to warrant the time and expense, willing participants and medical establishments – I literally didn’t know where to go first.  Every time I sat down to ‘have another go’, I’d end up with another banging headache, the way I always do after too much concentration.  I needed to start with smaller, simpler steps.  So the Overseas Training Programme is on hold until I feel stronger to address it again – or until I have a ‘Eureka!’ moment.  IT IS NOT SCRAPPED THOUGH.  I REPEAT, IT IS NOT SCRAPPED.  I don’t like quitting; it’s simply on hold as I have now to get on with the plan I am capable of doing: (Update: as of June 2013 this project idea was scrapped under the advice of the neurosurgeon I am now working with!  All for very good reasons.  The shunt donation project is now what we’re focusing on).

The second ‘Great Plan’ – not so ‘great’ in terms of scale but equally great if it means saving childrens’ lives
The second – more immediately ‘do-able’ plan is for shunt donation.  Shunts are often key to surviving hydrocephalus, yet the cost of buying them and implanting them means that for many infants and children, they are simply not accessible.  Children are left with no options.  In Vietnam, due to costs and difficulties in screening those who may need surgery, usually only the fittest are operated on; the rest are left to die naturally.  Kim had mentioned in her video about donated shunts; feeling that this may be a more realistic goal, I decided to pursue this option and see if I could a) find out just how many shunts are discarded and how many could actually be used and b) get my mitts on ’em.  Operation Shunt is on.

You can read about how this project is now developing here.