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

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

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: http://susanandlelandinkijabe.blogspot.co.uk/),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.

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.