shunt Archives – Jordantheheadcase

Have You Tried Switching 2020 Off And Back On Again?

March 21, 2020

No, I did not stockpile. That is honestly all I have.

Yo. Long time no write. I hope you’re all as well as can be and holding up okay under what has been the most surreal start to a year. Brendan, Ciara, Dennis, The One-We-Unofficially-Named-Emily and Jorge have all gatecrashed our UK weather party and frankly overstayed their welcome. It’s a bit strange to have a weekend without a named storm, to be honest. We’ve waved goodbye to the EU (no I’ll never be okay with that and I still can’t believe it) and now Coronavirus is weaving its way through the world, triggering mind-boggling behaviour with people buying so much loo roll that you really have to wonder what the heck people are eating if they feel that 36 toilet rolls should be sufficient for a few weeks potential quarantine. All this and it’s not even the end of March yet.

Talk about timing…

Clearly my shunt has been feeling in need of the limelight too, so has decided, after nine years of near-perfect behaviour, to retire. At the best of times, this would be a drag. Expected eventually, yes, but still a bit of a drag. But to have it coincide with the single biggest health threat to the entire planet in decades is, to put it mildly, slightly inconvenient timing. Our beloved NHS has been struggling with bed and staff shortages from ten years of austerity cuts and now it has the seismic task of accommodating potentially thousands more seriously ill people. I am certainly not alone in my situation; I have joined the thousands-and-thousands-long queue of those whose operations have been cancelled and who are simply going to have to manage difficult symptoms as best they can until – well, who knows until when? However, my concerns now lie with the whole world staying the heck away from this virus. My close friend has been officially diagnosed and falls into the ‘high-risk’ category, having recently had a liver transplant. So what does he do? Skips off to Switzerland for a skiing holiday, falls over, breaks a rib and then contracts Coronavirus along with seven others out of his party of ten. Yeah…probably didn’t want to do that, bruh.

He called me last night after days of texting (he couldn’t speak for days) and it looks as though he’ll pull through without having to go into hospital. I cannot tell you how relieved I was to hear his voice. He said it was ‘really something you don’t want to go and get’. This from a man who was ill enough to warrant and go through a liver transplant. Noted.

So we high-risk or no, bro?

So – fellow shuntees and hydrocephalus people – you’ve probably also been wondering if being shuntees and hydrocephalus people places you at a higher risk of serious illness if you contract Coronavirus. And like me, you’ve probably been Googling for answers and coming up with – nothing, really. Underlying conditions are more risky. We have an underlying condition. But it’s not specifically listed. Therefore is it risky? And round and round we go.

To get some clarification, I contacted three members of the neurosurgery department at the National Hospital in London (one of them my own neurosurgeon). They all got back to me within three hours of each other. Honestly, you wait nine years before having to consult your neurosurgeons with problems again and then three call you up at once.

Here is what they all said. Of course, none of this is definite. It’s just likely, based on their wealth of experience and what they know of the virus so far – straight from the ~~horse’s~~ neurosurgeon’s mouth:

The shunt itself is highly unlikely to be affected by the virus.
There is nothing about having a shunt which is likely to make a person more likely to catch the virus or be seriously ill if they did. Any serious complication would be likely to come from other underlying health issues, such as diabetes, heart disease or a lung condition which increases the possibility of pneumonia developing.
Getting coronavirus is likely to make hydrocephalus symptoms worse (headache, tiredness) but those symptoms are unlikely to be dangerous. It still seems to be pneumonia causing lung complications which lead to serious cases.

Do read this article from the Hydrocephalus Association too: COVID-19 Information. It’s a good and reliable summary of information and advice.

Personally, I’m playing this situation on how I usually respond to getting a heavy cold or ‘flu; I’ve ended up in hospital twice from heavy colds gunking up the CSF and causing the shunt valve to pack up. Plus my head pressures get SO bad when I’m ill that I can imagine it’ll be the same if I get this virus. So I’m staying the heck away from people and in doing so, hopefully the heck away from a much-needed hospital bed. I recommend that if any of you are concerned, you contact your neurosurgeon. They are super-busy right now but they’ll get back to you. Mine reassured me with ‘we’re still here, Jordan. We can’t help you as soon as we’d like if you’re not a serious case but we will as soon as we can and we will if your condition becomes serious’. You can’t ask for more than that. This is why I love the team I have so much.

Ah, floor…how I’ve missed you.

So for the next 6 months or so, I’ll be lying flat a lot (seems I’m overdraining). At work, my colleagues were getting used to walking in on me a couple of times a day, lying flat on the floor like a sardine, doing emails.

I’ll be down here if you need me.

Lying flat literally fills my head back up and then I’m okay for another couple of hours. It’s been nine years since I last had to do all this so although I’m a little out of practice, it’s all coming screaming back to me! Caffeine also really helps low-pressure symptoms so after the same nine years of not touching the stuff, I’m now having to drink about five cups of caffeinated coffee a day. To say I’m having the shakes a bit as my body gets used to it would be an understatement. Sorry, bod. You’re just going to have to keep up as best you can.

I know these are worrying times. Everyone has their own story. Every person has their own concerns about their loved ones, their job, their own health. We just have to muddle through this and look out for each other along the way. Today my brother, his girlfriend and I started a home shopping/delivery service for the elderly and vulnerable in our local area. I’m dropping the leaflets and taking the orders, my bro and Maxine are doing the shopping, I’m dropping it off to the villagers. All done with gloves, antibac gel, lots of distance and (where possible) washing of bought items before we deliver them. That may seem a little excessive but we’re not taking any chances. The couple we delivered to today had been panicking about what to do so check in (if you’re able to) with your neighbours. Alleviating worry can be so easy to do and mean so much.

Stay in touch, y’all. I have everything crossed that you and your loved ones will all be okay. And if it all gets a bit much, have a lie on your carpet, switch on yer Skype and let’s have a floor party.

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‘We Need A Cure!’ – Why I Don’t Ever Say That On Here (And Also Why I Understand Why Others Do).

October 11, 2017

I love September as in my mind it’s the start of Autumn (my favourite season). I run to my own timetable and declare the 1st of September to be the first day of Autumn (even though it isn’t) because I love it so much and I don’t really care that I am factually incorrect. I get all happy and excited and start taking waaaaay too many photos of red and brown leaves, conkers on the ground and squirrels running around with horse chestnuts in their mouths. I’m probably quite irritating with it.
What I didn’t realise this year is that September had been selected as ‘Hydrocephalus Awareness Month’ in America by the Hydrocephalus Association (HA), a worthy organisation which focuses on finding a cure for hydrocephalus as well as providing information and community resources for those affected by the condition in the States. Whilst I am all for raising awareness for medical conditions (writing this blog does that a little I suppose), I do sometimes struggle with the many ‘we need a cure now!’ messages regarding hydrocephalus that find their way onto my social media pages (I get tagged a lot!). I never post them. The first thing I do is untag myself so they don’t show up on my account. The reason for this is because whilst I do think that yes, a cure for hydrocephalus would be a wonderful thing which would alleviate a lot of suffering for people all over the world, I have personally found that doing what I can to improve my life right now, with hydrocephalus, makes me feel far more hopeful than holding out for someone else to come up with an outright cure and solve all my health problems for me. A total cure may well not happen in my lifetime; after all, hydrocephalus has been affecting people on planet Earth since human brains developed. Hydrocephalus symptoms were regularly described by Hippocrates (born 460 BC; that dude is old) – and so far a cure has still not been found, despite the awesomely jaw-dropping developments in medicine which have kept us all alive thus far.
The actual causes of hydrocephalus can be in themselves a bit mystifying. I suddenly got it out of the blue when I was 26 after a gym session…well, maybe I didn’t actually develop it right that second but that’s the very moment the headache which I still have now made itself known. The docs never discovered a concrete reason for it. And I have a very complex case which has proved notoriously difficult to effectively treat over the years as even the teeniest adjustment in pressure causes my brain to throw a complete, over-the-top, diva-esque hissy fit of a tantrum. My neurosurgeon, who is the top in his field, told me he’s not even sure which category I should fall under! So for a total cure to be found which will suit everyone…well good luck to those who are trying. And I honestly mean that ever so sincerely.
Shunts, to me, are downright amazing. Yes, they fail. Yes, they get infected. Yes, we have to undergo a brain surgery to put them in, take them out and fix them. But if it weren’t for that unassuming device in my brain right now, I’d be dead. Simple as that. And I’m really glad I’m not dead because then I’d be missing out on Autumn.
To me, the most positive thing I can do whilst living with a condition which hurts every day and for which there is no cure is to live my life in the best way possible; to try and socialise, to try and work, to try and do all the little, strange things which make me happy and to deal with the bad days (usually by keeping myself to myself and just getting through them knowing that they, too, will pass). The reason I’m writing about all this today is that some of the messages I’ve seen on social media highlighting the ‘need for a cure’ and the call for ‘no more brain surgeries’ (which has been highlighted by ‘#nomorebs’ on social media) have worried me a bit. Whilst I understand the sentiment – and frustrations! – behind these messages, I also feel they are not all that helpful to people like myself, who have and will face more brain surgeries in order to survive. No alternatives to brain surgery in terms of treatment are offered in these social media posts demanding an end to brain surgery…what are the choices for us if not that? There are actually ways of treating hydrocephalus symptoms without a shunt in some cases…medication to reduce the amount of CSF production if the individual’s brain is able to drain a small amount on its own…but in cases like mine, where I’m 100% shunt-dependant, there is no alternative. So to present brain surgery as nothing but negative to me is not that helpful. Those of us who’ve been through brain surgery or surgeries know…it’s not good. It sucks. We’d all love to never have another one, ever. But if you’re reading this and you’ve had a brain surgery, you’ve survived it, got through it and are well enough to be sat here reading. So hey, we’re alive from that brain surgery! We rock! Virtual high-fives all round!
I would say that although I get the hope behind the particular campaign I’ve mentioned, although I understand the desperation felt by families of children and individuals facing their umpteenth surgery, for me focusing on the here-and-now is the best way to cope. One hour at a time, if you like. Maybe one day there will be a cure. Maybe one day there will be ‘no more brain surgery!’. But right now, even though all those healthcare professionals and researchers are working as I type to achieve just that, we don’t have a cure and we will have to face more brain surgery (most likely). So I say focus on the positives. Don’t dwell on what you’ve missed out on due to being ill. Think about what you can enjoy, NOW, since you recovered from that surgery. Don’t regret the negative impact that surgery and illness may have had on your education and career. Think about firstly what a freaking achievement you’ve made getting through what most people would never want to face. Think about what you CAN do in terms of work and study…and adapt accordingly. You may have to do things a little differently to the way you’d imagined but I’ll bet there is a whole load you can do with time and consideration. If you’re struggling with your symptoms, talk, talk, talk to your surgeon and team about options. If you’re hitting brick walls with that, go to your GP for a referral. If you gather the support of friends and family and keep focused on what YOU can do, even though I know it’s hard when you’re feeling generally crap, you can make changes for your own life, no matter how small and that can feel so empowering. And then you can leave the hunt for a cure and no more brain surgery to the pros whilst you marvel at the positive changes you’ve made, for you, right now.
I do hope we will one day have a cure. And I totally get and respect all those who are crying out for one. But I also say it’s okay to look at your situation and think ‘okay, this isn’t how I planned things and it feels really bad right now. What can I do?’. And if the #nomorebs social media hashtag comes true, great…just don’t forget to thank #brainsurgery for all it’s done for you so far because without it you most likely wouldn’t be revelling in the beautiful colours of Autumn and the cutesy little squirrels and the smells of bonfire smoke and…what do you mean, ‘that’s just you’?!

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Our Charity Starts At Home…But It Doesn’t End There

May 9, 2017

After a few years of snatching spare bits of time to get what started as the ‘shunt donation project’ off the ground, I feel that it’s finally getting to where I wanted it to be.

The idea started back in 2011 when I was badly overdraining and waiting for a bed at the National Hospital; I felt so terrible that I was online searching for…what? Something. Some hint that I wasn’t the only one going through this, I suppose. I used to do that rather a lot when I felt physically awful and emotionally drained from feeling permanently ill and preparing to go through yet ANOTHER brain surgery. It never really helped; all I’d uncover were horror stories of brain-surgeries-gone-wrong. (If you find yourself in the same position at any time, may I suggest going to Shine if you’re in the UK or the Hydrocephalus Association if you’re outside of the UK?). Both offer excellent advice, reassurance and have community links where you can chat to other people in the same boat as you….AVOID THE HORROR STORIES AT ALL COSTS.

Anyway, (a quick recap for new readers), I stumbled across a film from Vietnam highlighting the plight of children and babies with untreated hydrocephalus and mentioning that shunts were sometimes donated from hospitals to help with the treatment. To cut a very long story short, I started to gather what information I could on the situation and started asking hospitals if they had any spare shunts. This took a good year as I wasn’t actually well enough to do much at all (I was having brain surgery on average once every 6 months at this time…this went on from 2000 to 2013). When I finally had some breathing space in 2014 I teamed up with a consultant neurosurgeon at the National Hospital in London (Lewis Thorne) and we co-founded Action For Hydrocephalus, which was finally registered as a charity at the end of 2016.

Goal achieved; one of the children after a successful shunt surgery using our donated items (Ethiopia, April 2017).

We are now three, as we were joined by another neurosurgeon from Great Ormond Street Children’s Hospital (Greg James). So far we have sent donated shunts and neurosurgical equipment to Uganda, Kenya, Vietnam and Ethiopia.

In 2016 we teamed up with Reach Another Foundation, who work in Ethiopia. We’d donated shunts to them before but Dick Koning (Founder) thought there were more possibilities by working together. We’ve met a few times and are now partners. Dick and his team regularly operate on babies and children with hydrocephalus and spina bifida as well as training neurosurgeons. We are in discussions with regard to a possible training exchange with the UK (so we’d fly surgeons out there to train Ethiopian students as well as having them over to the UK to observe shunt surgeries here). We also help equip their expeditions to Ethiopia as there are no neurosurgical instruments available out there; without equipment and shunts no surgeries are actually going to be possible.
Running a charity from your living room (the meetings are held in London but all the other work is done at my house) can be a messy business. More often than not my little home has shunt kits, boxes of neurosurgical items and a lot of paperwork lying around .

Shunt kits can be rather big. Cats can be rather nosy.

Keeping my inquisitive cat out of the boxes and packaging is one task. Not tripping over them is another.
One downside of my hydrocephalus is that I’m so pressure-sensitive I can’t fly on planes any more. So I can’t actually get over to Ethiopia myself (yes I know I could go overland but it would also render me bankrupt). So getting photos and feedback from the team who’ve received and used the donations is nothing short of wonderful; to see the children after their surgeries, knowing that a shunt is now safely inside each of their heads and that now the hideous feelings of high pressure will start to be reduced, literally lifts a weight off my shoulders. I know first-hand how high pressure in the brain feels. To have it without the knowledge that it will soon be treated is unthinkable to me. Being ill in hospital isn’t nice but it could be so much worse; I always count myself very lucky to have been born in the UK with access to hospitals, surgeons and healthcare – none of which I have to pay for directly. Very. Lucky. The most recent expedition to Ethiopia was just last month in April. Dick had emailed me a few weeks prior with a list of equipment which was urgently needed and asked if I could help. This is when holding down two jobs and trying to get charity work done becomes a little tight. Luckily this time, as before, I had two very understanding donors who acted immediately.

One donation, two donation, three donation, four!

The companies who donate the actual items we send out are absolutely crucial. Without them, the money would have to be raised to buy the equipment which would slow things down to the point of being dangerous for the children who need urgent surgeries and would also at times make some surgeries impossible if the money can’t be raised.

One of the tiny patients: April 2017 expedition

I have been very lucky with the donors I have worked with; all of them who have given their equipment in abundance and completely free of charge (including shipping; I always say I’ll pay for that and they never let me) do so with goodwill and a real desire to help. In the past we have had donations from:

Sophysa
Codman
Medtronic
Single Use Surgical
And various hospitals!

This time around we were lucky enough to add a new and very generous donor to our growing list. We were already being helped on this occasion by Single Use Surgical (who had helped equip the trip made in 2016), but also had Surgical Holdings on board for this trip. Surgical Holdings are a family-run company located in Essex and quickly sent a whole load of equipment from our list.

Dr Esayas receiving some of the donations from Surgical Holdings & Single Use Surgical in Gondar (April 2017)

Approaching a new donor is always a little nerve-wracking for me. After all, I’m literally asking a company if I can have some of their products for free…I know it’s for a charity but I still get a little knot in my stomach when I ask. And I really shouldn’t because I have never received a negative or rude response. If the company are unable to help they’re always profusely apologetic and if they can help, they are so enthusiastic and supportive it makes me feel ashamed of being worried about it. Because generally, people do want to help, especially when they know more about what we’re doing.

This time I was in touch with Daniel Coole, Managing Director, who replied quickly to my email with ‘absolutely; if we have these items we’ll help. How many?’. It was as simple as that. What a kind man. Soon after, a large box arrived at my house with everything the team in Ethiopia needed. Unfortunately, actually getting the goods to Ethiopia can be a little tricky; we’re not dealing with Royal Mail and British customs here!

Inspecting the items with smiles.

Paperwork requirements keep changing, items get confiscated at customs for various reasons and never returned…it’s a bit of a gamble. And also sometimes takes a bit of to-ing and fro-ing with the donors to ensure we have the right paperwork etc (which keeps changing). It’s not the fault of the donors and can be a bit time-consuming for them which frustrates me no end; I want it to be as seamless as possible for them. However now Dick has established a new system with customs and Ethiopian Airlines so we’re hopeful that from now on the whole donation procedure will be nearly effortless for the donors.
So generally, I track down, beg for and receive the items at my home, take them personally to a volunteer flying out to join the Reach Another Team in Ethiopia and she carries them with her hand luggage. Given the vast amount I received this time around from two donors (Surgical Holdings as already mentioned and also Single Use Surgical who have donated before), I felt a bit guilty about handing them over to her; talk about heavy!!

Another of the babies ready for surgery.

I wouldn’t fancy lugging that load to Ethiopia on top of all my normal luggage. I do seem to spend rather a lot of time feeling a bit guilty doing this work; guilty for asking for free stuff, guilty for passing it on…I really must get over that! Ciara (the lovely volunteer) didn’t bat an eyelid. She was too busy being excited about the donations. And so she should have been…it was generosity on a huge scale.
Yesterday I received the first photos from the team in Ethiopia which I have shared with you here. They show one of the surgeons unpacking the items and also some of the little patients who they were used on. As we had so much equipment, the donations were sent to three different centres which was amazing; without them, these surgeries couldn’t have been performed and the babies couldn’t have been saved. So thank you Daniel Coole and everyone at Surgical Holdings, Single Use Surgical and all the other donors who have helped us in the past (and who can hopefully help us in the future). Because without you, there would be a whole lot more suffering going on.

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A Rather Overdue Update

June 16, 2016

Where does the time go? Seriously, that is a genuine question. Anyone who has an answer, please let me know. I’ve had quite few emails from readers asking when my next post was going to be so I thought I’d better get to it. I apologise for the long absence (I think it’a been about a YEAR) and thank you all for your frequent comments and questions about the blog; I’m glad it is helping so many of you understand what it’s like to live with hydrocephalus and what to expect when facing surgeries/ICP monitoring and so on. I am absolutely going to try and write here more frequently now things have calmed down a little. Rather a lot has happened in the last few months, most of it good! At the moment I’m pretty under the weather with a horrible virus (not good) which seems to be lasting an eternity (not good) and I can’t remember the last time I felt this rough, which means my immune system must actually usually be quite effective at fending off such viruses (good).
So…update on the charity side of things! Well I’m still waiting to get my charity registration number – this process seems to take quite a long time but I believe I’m nearly there. The website is pretty much finished and ready to go; I may put a link to it at the end of this post if I’m feeling brave enough. Please bear in mind when you have a look at it that it was designed by ME. I am not, by any stretch of the imagination, a web designer. So yes, it’s basic but I hope it gets the message across about what we do. By the way, I need a good logo – I’m not even going to START trying to design that – so if anyone has had experience of getting logos designed rather cheaply (I’m paying for it so there’s a budget!) please send any suggestions this way and they’ll be very welcome!
In March this year, Reach Another Foundation flew over to the UK so we could all meet up again. Reach Another Foundation are a charity Lewis and I donated some shunts to a couple of years ago, headed by Marinus Koning; I wrote about this in an earlier blog post. Just to confuse you, although Marinus is his name, everyone who knows him well calls him ‘Dick’ and he said I could call him this. So when I talk about Dick I actually mean Marinus. Same dude. Reach Another Foundation work in Ethiopia and have done amazing work out there. I mean, seriously impressive. They work to improve access to medical treatment for hydrocephalus and spina bifida and have also opened Ethiopia’s first school dedicated to the education of autistic children. As if this wasn’t enough, they are also training neurosurgeons out there; in 2009 there was only one neurosurgeon to treat Ethiopia’s population of over eighty million. Thanks to Dick, his team and the programs they have set in place, they are on target to have twenty-five neurosurgeons by 2020.
So where do we fit in? Well, the first fantastic news is that Lewis and I have been joined by a third trustee; Greg James, consultant paediatric neurosurgeon at Great Ormond Street Children’s Hospital.

Greg James; consultant neurosurgeon and our newest trustee

This has been a great development for us because not only is Greg an amazing surgeon and a very nice guy to boot, but he and Lewis are going to fly out to Ethiopia with Reach Another Foundation to (fingers crossed) start up a training exchange. The plan (still being discussed) is to fly the trainee neurosurgeons over here to observe Lewis and Greg in theatre and learn as much about our techniques as possible (they are not permitted to actually carry out surgery here due to frankly ridiculous amounts of rules and red tape – nice one, UK). Then Lewis and Greg will fly out to Ethiopia with them later and oversee them performing (or assisting with) said techniques on the patients over there. And of course whilst they are there they will be doing a whole myriad of other things; Greg is taking over hygiene protocols recently set up in Great Ormond Street (which amazingly reduced the infection rate by a THIRD) to set up in Ethiopia – just imagine the impact it’s going to have in a place where infection is rife. And me, what do I get to do whilst the boys are out in the field, working hard? Alas, I cannot go with them as I can’t fly (head pressure issues) so I’ll have to stay at home like a good little 1950s housewife and keep things in order! I know my place. Just kidding. I have a lot to be getting on with; we have now established the shunt donation scheme and put it to the test in April with the mother of all deadlines. Whilst Reach Another Foundation were here in February (I got to meet the whole team – around ten in all which was lovely) they told us about their next trip out in May when they would need all manner of surgical equipment as they were going out to perform some overdue operations on children with spina bifida and hydrocephalus. In Ethiopia as you can imagine, they have literally nothing. I asked them to send me the list of equipment once it was finalised and I would see what I could do about getting as many items as I could for them. Well, cue three months of frantic running about. First I asked hospitals, clinics and neurosurgical centres; none of them could help (although they very much wanted to). And we can literally thank our current government for that. The cuts they have been making to the NHS means that hospitals are clinging on tooth and nail to every last bit of equipment; any items not used have to be sent straight back to the manufacturer and cannot be donated. What a change to a few years ago when I first applied for shunts. I got a ‘yes’ from the first hospital I asked. Whilst this is all very understandable from the hospitals’ perspective, for me it was a logistical headache. Just where could I get these items from? The list was long, the items were multiple and expensive and, not being a surgeon, I didn’t know what any of them were. Oh, the irony; I’ve come into direct contact with these very instruments time and time and time again, but because I’ve been flat out asleep, I’ve never seen one of them (thank God from the look of some of them to be honest). In the end, in April and just as I was about to give up (I HATE giving up), I had an appointment with Simon, my hydrocephalus advisor at Queen Square, who I’ve spent so much time with over the years that he feels like a friend and not a healthcare professional. He knows about my project and always takes a very keen interest in it. I told him of the struggle I was having (I had obviously already asked him if Queen Square could spare anything) and he suggested going straight to the manufacturers. This may seem a blatantly obvious course of action to many of you reading and I had considered this way back at the beginning, but dismissed it because to my way of thinking they would be making a direct loss by donating items that they could otherwise sell at full cost. However, Simon said (a great game) to bear in mind that even though these are businesses making products to make profit at the end of the day, they are doing so within a sector where an awful lot of goodwill exists. I had seen this first-hand with the companies who have donated shunts to us before but this list was so extensive (and expensive) that I hadn’t held out much hope from going down that path again. But Simon urged me to try. The dude is right about pretty much everything most of the time so who was I to argue? So I sent out a fleet of what can only be described as begging letters to all the manufacturers of the products I was after. And back came yes after yes after yes! In the end I had over half the list of items; some of them were simply not in stock (but are on their way to me now for Reach Another Foundation to take with them on their next trip out) and a couple of the items I found out later cost £20,000 a piece! Oops! There I was asking if they could spare eight, or ideally sixteen! I forget sometimes how much of a learning curve this all still is. Note to self: next time find out how much the items are BEFORE you start asking.
However, we had a good result and especially from Sophysa (who have donated shunts to us before and happily handed over ten full kits, instruction manuals and shunt passers) and Single Use Surgical, who donated pretty much everything else.

Just look at all those lovely donations – thousands of pounds-worth! L-R, Ciara Baxter (volunteer for Reach Another), Lewis et moi.

So in May I went to London to meet Ciara, a volunteer for Reach Another Foundation who I had met a couple of years earlier when we sent the first donated batch of shunts out to Ethiopia with her. I met her in London, took all the equipment up with me and we met with Lewis in his office to do the official hand-over and to take some photos as well, to thank the companies who had donated. Greg unfortunately couldn’t make it (trying to get all of our schedules to coincide is usually impossible) but we got some good photos done. I felt a bit bad that we’d had to leave Greg off the photo and Lewis suggested Photoshopping him in. No doubt as a joke but I immediately saw a fun challenge there (I have no idea how to use Photoshop) and tried to stick him into our photo.

As if by magic, Greg appeared.

Which kind of worked, only I’m slightly turned away from him and he’s off to the side a bit so it looks like the three of us are trying to edge him out of the group! So that photo will not be sent to anyone because edge him out we will never do. And so off to Ethiopia the donated items went! Dick contacted me to say that the donations (needless to say) had been a hit and the surgeon receiving them had been moved to tears. Incidentally, the surgeon is Dr Yordanos who is Ethiopia’s first and only female neurosurgeon. They are starting up a hydrocephalus program over there so Dick is going to let me know about it as soon as we can Skype and hopefully we’ll be able to help with that in some way. The donation programme is ongoing and is not limited to shunts only; all neurosurgical equipment and also general surgical items are being received. I’ve just had notification of a lot of surgical masks which I’m following up and we now have some Penfield dissectors (neurosurgical stuff) on their way. Currently I am getting a database of participating hospitals/clinics and manufacturers together to make all this run a bit more smoothly. And looking into storage space too!!

The other thing I’ve been working on regarding the charity is our shunt symptoms/diagnosis tools to send out to new parents and parents-to-be in more rural areas. I have now legally acquired design rights so I can safely reveal it; we have opted to use line drawings rather than photos shown but this gives an idea of how the design works. The symptoms show ‘good’ symptoms on one side and ‘bad’ hydrocephalus symptoms on the other. We have not used words as literacy levels in developing areas vary greatly so thought it best to use visuals only; then we can send it out to any area and be sure that the recipients will be able to use it properly. On the reverse-side of the card will be photos showing parents how to use the attached, specially-modified tape measure (which Lewis and Greg are in charge of) and then images showing to seek help if the tape measure reveals a too-large head circumference. We may need to include a chart on the reverse-side of the card too but will finalise this later. The tape measures will be attached to each card in a way which means removal is near impossible, so they cannot get lost. The symptoms card itself can also be blown up to poster-size so it can also be displayed in waiting rooms in hospitals and health clinics. I am hoping to get the tape measure design finished by the end of the year and then after we’ve tested it extensively at Great Ormond Street, we’ll be ready to go into production. We have a charity in Vietnam (Helping Orphans Worldwide) who have said they’ll happily do the first distribution for us and who also have offered to help with the printing and production side of things. Just how we’re going to get these out to the rural areas (where late presentation is one of the main causes of terminal hydrocephalus) I haven’t worked out yet but we’ll cross that bridge when we come to it. Fundraising galore I think is going to be the answer! Hydrocephalus is going to happen but if we can educate parents in what to look for, to assess their own child and act quickly if their child is displaying worrying symptoms, this could really help to get children treated rather than it being too late and leading to a terminal diagnosis.

So that’s what we’ve been up to recently. I have to shoo off for now but will update with more hydrocephalus-related info soon. I’ve received ever such a lot of emails from you all with more questions about all manner of things so I think I’ll compile those into a new Q & A post. Which I promise to do SOON. Not in a year.

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There’s No Place Like Home; Dorothy Was Right About That.

October 22, 2013

Hospital Then Home Sweet Home….

Yay! I’m home! Three-and-a-half weeks in hospital, one ICP bolt, six pressure changes and one nasty post-operative episode later, I am home. I love my home so much that it’s very hard to leave it, but even better to return to.

My little house…soooo pleased to be back!

As you will know if you read this blog, I’ve been struggling with bad symptoms for a few months now and the recent stay in the National Hospital was to determine just what was going on (if anything) with my shunt. I’ll keep it short due to having been in there for weeks; we’ll be here till Christmas if I tell you everything in detail. I had an ICP monitor placed in my brain on my second day there and that stayed in for three weeks. An ICP monitor is a probe which sits in the brain and which, when hooked up to a monitor, reads the intracranial pressures every second. It charts them out as a graph as well so that neurosurgeons can look for any abnormal patterns or pressures. There is more on ICP monitoring in a post I’ve nearly finished, with a video of mine being removed for anyone who is facing their first and might be a bit worried about what it all entails. I’ll link to it here once it’s finished in the next couple of days. Once the bolt is in your head, it looks pretty odd but it’s okay. Here’s a picture of me totally rockin’ the look.

It’s a winning look, let’s face it.

This time around the pressures were very low to begin with, so Mr Watkins tried increasing the setting on my shunt in stages initially to try and get the pressures to read a bit more ‘normal’. However..nothing happened. I was on setting six to begin with and by the time we’d reached setting thirteen, still nothing was happening with the figures on the monitor screen. The only thing happening was my brain going into a tailspin of pressure every time the shunt was adjusted. We discovered that increasing the pressure in twos or threes wasn’t doing me any good; my brain clearly doesn’t like being tampered with on any level so we resorted to increasing the pressure just one at a time and giving me a couple of days to recover afterwards before we moved it again, hence the long hospital stay! When we reached setting fourteen, everything suddenly started to shift and within hours I had high pressure symptoms, which was odd to say the least. Mr Watkins thought that maybe my brain didn’t need the shunt now as much as I had done before, but that didn’t explain why nothing happened on settings six to thirteen; if my brain was draining partially on its own now, that would surely have been reflected on all the shunt settings, not just number fourteen. I am now on setting twelve and that is where I have been for two weeks. The team agreed that I needed to go home and rest my brain, especially after the ICP probe was removed; my head didn’t like that one little bit and I became very ill (which is very rare as I’ve had about eight or nine bolts removed with no problem whatsoever). Setting twelve is now proving to be too high so tomorrow I am going back to the National to see Simon and have the pressure reduced to setting eleven, to see if that starts to help. I really want to get back to normal so I’m praying that it does. So for the last week I have been resting and chilling out in my lovely little home, pleased to arrive back just as the turn of the season is about to commence.

Yes. Sheep and the Tardis in the field next to my home. I don’t get it either.

Autumn is one of my favourite seasons, along with Spring. The trees are just starting to turn from green to golden browns, reds and oranges and the air is full of the scent of Autumnal bonfires. The squirrels are back, sourcing their Winter food supplies for their kitchen cupboards and the whole countryside is full of earthy, woody, rainy, smokey scents. Blissful!

Lovely Autumn evening light

I adore the Winter months; don’t get me wrong, warm sunshine on your skin can feel great but I’m always relieved to leave Summer behind as I can’t tolerate heat too well; my loves are the rainy, foggy, crisp, cold, snowy Winters and the Autumns which proceed it. Of course, living in the countryside helps fuel my passions! I get all the glorious scenery and wildlife here too. My cat, Hoshi, is pleased to have me home and that’s a slight understatement. I had an excellent cat-sitter staying here for two weeks and the remainder of the time my Mum and a friend stepped in. A plus point of living in such a gorgeous property in the countryside with a hot tub in the garden is that people are more than happy to come and stay in it whilst feeding the cat.

Hoshi. She likes to warm her bum on my laptop for some reason.

I haven’t been able to get Hoshi off me, to the point where I look as though I have grown a furry appendage as she’s constantly lying across my shoulders as I go about my business, looking like some strange furry fashion accessory. Which purrs.
Two good things happened during my hospital stay which were totally unrelated with my head. Firstly, Lewis Thorne (the neurosurgeon who is assisting me with my shunt donation project) came to see me on the ward (‘social visit!’ as he put it) and after general how-are-you-and-what’s-happening chat, he told me that he’d sourced some expired shunts in the National that he was putting aside for us to send out. Hurrah! From what he said it sounded like there were quite a few of them. He’s on leave for a bit till early November so once he’s back I can hopefully go and have a look at them and get them out to countries in need. Hurrah for him. I also had an email from a donor I’m not allowed to mention because they would rather be kept secret, but it’s from a lovely hospital who also emailed me to say that they have a lot of surgical equipment for use in neurosurgery to give me. Some UK guidelines have recently been amended so they cannot be used here anymore but they are certain they would be absolutely fine to use in areas lacking in equipment. I am meeting with the donor tomorrow morning to have a look and pick them all up, then when Lewis is back I’m going to ask him for a little lesson in ‘identifying totally alien neurosurgical utensils’, as I didn’t recognise anything that was mentioned and don’t have a clue what it all does! So…shunts AND surgical equipment! T’was like Christmas.
The other good thing that happened involved another neurosurgeon. George Samandouras also works at the National and (I am certain) oversaw a fairly major surgery of mine in 2011 when Mr Watkins was out of the country. He writes a blog about his work which I stumbled across at the beginning of this year and it was through reading his blog that I became inspired to start this one, to log my shunt donation project and to keep myself motivated. Mr Samandouras includes amazingly inspiring quotes (his own!) in his blog and I was so impressed by some of them that I wrote a few of them out on Post-It notes and stuck them on my fridge. One is ‘it’s fascinating how human beings allow our performance to be affected by what other people might think of us! I find this extraordinary’ (this one helped when I worried about being laughed at by senior neurosurgeons who might think I was crazy in trying to stop the disposal of perfectly-useable shunts). The other one (which I still have up) is; ‘you know how they say “good things happen to those who wait”? Rubbish! Nothing happens to those who wait! Good things happen only to those who take action.’ Brilliant. Every time I felt myself slacking on my project, I’d read his words and get back to it. Anyway, having read his blog avidly all year (re-reading it often too), he walked onto my ward the first week I was there. He was treating a lady opposite me and he came to talk to her. He was there some time and I went to the bathroom and was thinking about everything I’d gained from reading that blog of his, how he had literally inspired me into action and as a result (hopefully) my dreams of getting unused shunts over to children in need might be realised. As I came out of the bathroom he was leaving the ward, walking towards me. I wanted to thank him for writing it, for inspiring me so much…but I became completely and utterly tongue-tied! Some people get star-struck meeting Madonna or other such celebrities; I become star-struck at the prospect of meeting Mr Samandouras! I quickly told myself to stop being such a loon and stopped him, introduced myself and thanked him for his blog and his inspiration.

I stand outside the hospital some evenings when it’s calm and quiet; it feels very safe to be here.

He was, as I predicted, totally charming and engaging and seemed genuinely interested in my situation; not that neurosurgeons are not genuine, only I didn’t feel he was just being polite. I want to link his blog to this one if he would allow it so I’m going to ask his permission first. But in case he’d rather not, I urge you strongly to look him up on Google and read the blog word-for-word. It doesn’t matter if you’re not interested in brains! He talks about all manner of things which inspire him, from music to travel to writing with a fountain pen. I promise you it’ll be time well spent. The man doesn’t have twenty thousand followers for nothing! (Update as of 24th October; Mr Samandouras emailed me this morning to say he’d be happy to link his blog to mine and also congratulated me on my ‘very well-written blog’. I went as red as my hair so it’s a good thing nobody could see it. Here is a link to his blog: please read and enjoy).
So tomorrow it’s back to the National…today I am feeling pretty rough so I am hoping that the adjustment will take me in the right direction. There may be no place like home but there is also no place like the National for when you’re feeling brain-weary.

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Shunt Donation Project – Three shunts = three lives (and another forty are on the way!!)

May 24, 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.

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!!

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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.

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.

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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!

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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

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.

3 Comments

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.

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.

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