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Cerebrospinal fluid

Shunt Donation Project – Ooooh, LOTS to tell!!

June 20, 2013

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....

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!

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.

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.