neurosurgeon Archives – Jordantheheadcase

Timing Is Everything!

January 13, 2021

My little lockdown companion. She sleeps strangely and I love her.

It’s 1.00pm. It’s Saturday, 9th January 2021. I’m sat on the sofa with Hoshi the cat sprawled half on me and half on her heated throw as she’s still undecided as to which is preferable. I’m watching the news whilst typing this and I think I’ve done this every day for 10 months now. The news changes. Life in its daily form does not. How are you all doing? I hope everyone is as alright as can be and finding a way through all this. I thought I’d get in touch and say ‘hi’, now that I’m well on the road to recovery from my dose of Covid and feel a little more up to writing. My apologies to all of you who have got in touch with comments and questions in the past 10 months. I am working my way through all of them and you’ll see them appearing on here over the next few days if you’ve not yet had yours published. It’s always good to hear from you!
I ended up having ‘long Covid’ – and boy, was it long. Nine months of real unpleasantness. The cough still returns on some days as does the crackling in my right lung, where the blood clots are. But the crushing fatigue and bone pains have pretty much gone although I have to watch what I do. I just feel very lucky to have recovered, especially with the statistics spiralling upwards at the moment. I’m very glad to know the vaccines are here and being administered (my Dad got his on Sunday and my Mum will get hers early next month). I won’t likely get mine until the Autumn so for now I’m being super-duper careful in my efforts to not get reinfected, which is a total possibility so far down the line after my initial infection. Like so many other single people, I’m literally at home all the time on my own apart from going out for a run, which I’m trying to do every week now to slowly build my strength and stamina back up. I live alone by choice at the moment so I’m used to my own company, but I’m definitely missing my work colleagues and daily communications with other people. I must say, however – to all parents who are homeschooling their children throughout these lockdowns – I HOPE AFTER THIS ENDS YOU ARE ALL AWARDED MEDALS.
This to me feels like my first ‘proper’ lockdown. I was far too ill during the first one to participate in anything, do any Joe Wicks workouts, watch any Netflix, bake any banana bread or do any Zoom quizzes.

I made these when I was feeling better. Then I gave them all away because I live alone and I have no willpower and no good can come from having a plate of these in your house when you’re in lockdown.

The months passed by in a blur of intense coughing and fatigue, hospital and doctor visits, severe insomnia, countless courses of (useless) antibiotics and regular socially-distanced visits from my brother and his girlfriend who would sit in the front garden to give me some much-needed company and meds. This lockdown, I’m well enough to be bored which is actually a huge relief. My workplace is closed for the foreseeable future so whilst furloughed, I’m trying like everyone else on Earth to find some routine and purpose for my days. My new activities include;

Yoga with Adriene
Baking banana bread (and cakes)
Regular Zoom sessions
Watching Netflix
Catching up with work for my charity

Basically, everything that everyone else was doing during the first lockdown. I am so unoriginal. Although I am also teaching myself Salsa on Youtube (minus a partner, the position for which I’m hoping will be filled by a tall, dark, handsome-ish type who makes me laugh so hard I want to wee and who will miraculously find his way to me in the middle of a global pandemic when half the world is in lockdown because in my head that’s completely possible). I’m quite enjoying Yoga With Adriene; I can touch my toes and everything.

Yep, that’s EXACTLY how I look when I do this position! *
*I’m lying.

Adriene is brilliant and can bend into positions I thought were only possible for paperclips. Doing yoga with a cat in the house is literally impossible, as any fellow cat owner will tell you. For every Downward Dog I do, there will be an Upward Cat, licking my nose and purring.

The only other eventful thing happening in my life is that my shunt, after nine years of impeccable behaviour, has decided to retire in the middle of a global pandemic when half the world is in lockdown and hospitals are overrun because OF COURSE IT WOULD. The surgery to replace it was cancelled last Spring, the upcoming appointment to see if a pressure adjustment might see me through for a couple more months has just been cancelled and for now, it’s just a case of trying to manage the symptoms and get myself to a hospital if things reach emergency-levels. The hospitals are just too busy to see me. I’m having regular telephone and email contact with my surgeon and his team and feel fully supported by them, as always. The only thing I feel bad about in this situation is the predicament of the NHS staff; every single one I’ve spoken to over the last few weeks and months has, without exception, sounded exhausted in a way I’ve never heard before.

These guys – both of whom have operated on me countless times, doing their time in the Covid ICU (on top of their neurosurgical work). Heroes.

I’ve come to know so many of them so well over the years that I also worry about the risks they are taking daily but so far, none of them have contracted it due to the good PPE they are lucky enough to have access to.
So, for now, it’s a strangely familiar but not-too-welcome routine of dealing with overdraining symptoms; drinking litres and litres of fluids – but rarely going to the loo which is really weird – caffeine as late as I can in the daytime to increase the pressure in my brain, lying flat if it gets really bad and waking in the night with headaches that painkillers just don’t seem to be able to stop. Then I’ll get a day where everything seems pretty okay and I’ll get all hopeful that maybe the shunt is actually working fine, only for the day after to be back to the aforementioned routine. That’s slow shunt failure for ya! From previous experience, my shunt rarely packs up suddenly (knocking on SO much wood, here) and simply gets more and more clunky until leaving it in is simply no longer an option. We try to act before this stage as I end up far more ill and having a far longer recovery as a result. But this time, I have a feeling we may end up on the unfavourable side of waiting and if that ends up being the case, it’ll all be fine. It’s life; sometimes it goes the way we want and sometimes the rug gets pulled from under your feet and you’ve just got to find your balance and wobble along for a bit. And the whole world has had to do that this past year. I wish you all well, pray you all get through this Covid-free and as a parting gift for this post, I refer you to the legendary Dolly for words to live by:

She rocks. If you disagree, don’t tell me. It won’t end well.

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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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New Season, New Directions…

April 7, 2014

Hello everyone! I’m so sorry for the mahoosive delay between my last post and now. I’ve been busy with work, sorting out shunts to send overseas and had not one but two laptop disasters;

Caught in the act.

first one caused by my cat secretly sleeping on the keyboard when I was out of the room and clogging up the fan with fur and the second caused by a mug of tea with a broken handle. You can guess the rest. But never mind, for ’tis Spring! Hurrah! I love Spring. Spring means flowers and bunny rabbits and seven very sweet little lambs appearing in the field next to your house, bouncing (and bleating) incessantly in the cutest manner imaginable. Any jokes about mint sauce at this point shall NOT be appreciated.

Thankyou for all your lovely comments during my absence.

One of my new little neighbours. Awwwww!

It’s great to know what people think about this blog; it’s not so great to hear of the difficult episodes some of you are dealing with regarding your own experiences with hydrocephalus but I do think it’s a comfort at such times to know you’re not alone. My own head is still being treated as an outpatient (outhead?) at the National Hospital with pressure adjustments being done every couple of months. We’re still not there yet following my glitch last year. My lovely registrar, Akbah, did say that it would take around six months to a year to get me well again and it looks as though (again) he is going to be correct. I’ve gone down three settings since I left hospital and I’m experimenting with things which might affect the pressure, such as my bed (usually raised on bricks at the head-end as I can’t bear to lie flat so am trying one brick, then two bricks, then no bricks), excercise, work hours and so on. I feel much, much better than when I left hospital so I know we’re going the right way. Is the fact I STILL feel ill frustrating? Yes. Does feeling down about that help matters? No. Onwards and upwards, then!

Changes And Developments With The Shunts!

I haven’t updated on the Shunt Donation Project as for a few months it’s been nothing but researching World Health Organisation guidelines, NHS guidelines, donation procedures, yadda, yadda, yadda….not exactly scintillating stuff. I needed to get some guidelines in place for both donors and recipients of shunts, to ensure that everyone would be singing from the same hymn sheet and that we would be doing things correctly. Anyhow, I had three lovely donations recently; the first from Lewis who sent me an email saying; ‘I have nine in-date shunts sitting here in my office for you’. Whoop-de-do! I collected them and allocated them to a new organisation I’ve recently started to liaise with, called the Reach Another Foundation. This is a non-profit organisation who work on various projects in developing countries to improve healthcare, education and living conditions.

Marinus Koning, Medical Director of Reach Another Foundation

Marinus Koning, the founder of the company and the Medical Director, was horrified when he first went to Ethiopia to discover that there were only two neurosurgeons for the eighty million people who live there. Through a neurosurgery training programme, that number is slowly rising; I believe there are five or six now….but still! As is often the case in developing countries, babies born with hydrocephalus are not deemed to be emergency cases and are pushed right to the back of any neurosurgical list. So of course, by the time they are finally dealt with, many have died and for the vast majority, treatment is not possible. Marinus had indicated on his website that a severe shortage of shunts was also a primary factor, which is why I offered him the nine which Lewis had got for us. He jumped at the chance and so I was able to put the first proper procedures in place, using our guidelines, signed statements and reports to ensure that no fraud can take place and that the shunts cannot be sold on for profit (given that they are worth hundreds of pounds, sometimes thousands). I had no concerns of Marinus selling them on the black market but it’s good to ward against such possibilities. So on Saturday just gone, I travelled to London with my Mum (girly day out) to meet up with Ciara Baxter, a volunteer for Reach Another Foundation who is flying out to Ethiopia in two weeks. It was really good to meet her; after all the endless faceless emails between myself, donors and recipients, it is a refreshing change to meet someone in the flesh! She was lovely and we had a good chat about the situation in Ethiopia and how we might be able to continue to help the situation. So I passed the shunts over and now they are on their way to Ethiopia and some waiting children. Marinus is very interested in joining forces with us to see what we can do together to improve things there so I am meeting with Lewis next week and then ‘Skyping’ with Marinus after that to get to hopefully get some plans in place. I shall keep you posted!

The second lovely donation I received was from Sophysa, the largest European shunt manufacturer.

Fantabulous shunts from Sophysa

I have been in touch with them for some time and have my very own ‘Ambassador’ there called Mohamed! He is a lovely man, very willing to help in whatever way he can. He was meant to send some shunts last year but then I not-very-helpfully fell ill so he sent them to me last month; a big shiny box of new, in-date shunts! These I have allocated to BethanyKids in Kenya as they were due to get some Codman donations last year but that unfortunately fell through. It’s very interesting doing these donations in terms of encountering enough hurdles to warrant an Olympic event. Although we are doing nothing illegal, red tape and high levels of potential fraud mean that we have to be a) very imaginative and b) rather cloak-and-dagger about the whole thing. Disguising valuable shunts as other invaluable items is now something that comes naturally to me. No wonder these poor people are having a hard time getting the treatment they need; not only are the governments not investing in their care, even donations from charities are often not even reaching them.

The final donation I had was from Adam Zeller, yet another lovely man who put me in touch with Mohamed. Adam works for a company called Fannin and they sent us some fantastic valves. No catheters but getting hold of catheters is not actually that difficult, so we should be able to send them out as full shunt kits. I don’t yet know where these will go. I have stated in the guidelines for donors which Lewis and I send out that all costs for postage are covered by myself. All three of these donors have refused to let me pay and Sophysa asked that the cost be instead donated to BethanyKids rather than go back to them.
All these donations from people who, frankly, have very full inboxes and busy lives, make me realise that it is actually rather simple to do this; you just have to be passionate enough about it. The donations which have fallen through have always had an air of ‘yes, sounds like a great idea but really busy at the moment’ with promises of donations and then nothing coming of them. The donations which have come through have just flowed, no problems, no barriers and no ‘gentle reminders’ needed from me! All the donors and the recipients have a real drive to get this done but with no fanfare or drama. They just get on with it and to heck with the extra workload. That’s why it works.
Now if only we could have the same success with the governments!! The Vietnam proposal looks as though it’s going to have to be abandoned for now; it has nothing to do with a change of heart or lack of determination. Lack of key contacts is the main cause, plus the fact that getting any information out of Vietnam is like getting blood out of a stone; it’s been exhausting and very frustrating and I’ve been working hard to try and make this happen but with limited contacts and no means of getting out there myself (I can’t fly due to pressure issues in my head), it seems more worthwhile to try this proposal with another country first, where I have more people helping me and therefore far more contacts! Whilst I’ve got Marinus so enthusiastic to make permanent change, I think the most appropriate thing to do is run with Ethiopia and see if a proposal to the Ethiopian Health Ministry could be a good idea. If that works, I can try again with Vietnam and maybe already having a successful pitch under my belt will help persuade Vietnam that if Ethiopia can do it, so can they. Ethiopia is a poor country so doesn’t necessarily have the money to fling at treating children with a fatal condition, whereas the Vietnam economy is very strong; it’s more a case of a lazy government by the look of things there! Anyway. Chats with Lewis and Marinus this week, hurrah! Action. Planning ahead. Working with people who want to help you bring about proper, long-term change. It feels great.
Oh by the way, I am looking into setting up a charity to raise money for this project; at the moment it’s not costing me too much money but I’m hoping that a proper established charity will help propel thing forwards. Name suggestions are very welcome!

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And People Still Really Need Convincing About This?

September 12, 2013

THIS POST CONTAINS IMAGES OF UNTREATED HYDROCEPHALUS CASES IN CHILDREN WHICH YOU MAY FIND A BIT UPSETTING SO IT’S UP TO YOU IF YOU READ IT; JUST WANTED TO WARN YOU FIRST!

If you’ve read this blog before, you’ll know that I have hydrocephalus and that I have a shunt which basically, keeps me alive. You’ll also know that during my surgery-free eighteen months I’ve been working on a project to get shunts sent to countries which are lacking in treatment for hydrocephalus, which is a massive problem and a particularly cruel one as it affects mainly babies and children only; simply because if left untreated, they die before adulthood. I am currently awaiting surgery next week for my own shunt which is malfunctioning so have been unable to work on this for over a month now but I hope to be back on it soon. What has become very apparent to me since I started work on this is the restrictions we have placed on ourselves to prevent helping other countries, which is totally ironic seeing as the government seems to pride themselves on providing foreign aid. Chucking money at a problem doesn’t always solve it, however and in the case of hydrocephalus treatment, there seems to be a real lack of not only money invested in it but actual motivation to do anything about it. I think it scares health ministries because it’s ‘specialist’; it’s the brain, so it’s scary. There is a fear in some cultures of such a condition; it’s associated with demons and the child is often abandoned as a result of pure fear on the part of its family. There are not many neurosurgeons in affected areas – sometimes none at all – and the shunts needed can be very expensive for poor families and poverty-stricken countries.

Go Vap Orphanage looks after hundreds of children like this – shunts need to be donated due to high costs.

Here is where the UK and any other country in the world which has a good hydrocephalus treatment system in place could help. But I’ve experienced now first-hand the frustrations of not only hospitals and the surgeons in them which want to donate their unused stock to me, but even the shunt manufacturers themselves, due to what are (in my opinion at least) overly-rigorous checks, guidelines to adhere to and restrictions regarding the donation of expired medical products. I appreciate that we need to be careful. I would never want to send out equipment which is faulty, which is damaged or which is dangerous in any way and neither would the neurosurgeon who is helping me on this project. Of course checks need to be made, audits may need to be performed and in some cases, shunts will not be suitable. But the real problem lies with the guidelines issued by the NHS and the World Health Organization (WHO). For instance, point 7 of the WHO Guidelines For Healthcare Equipment Donations reads as follows: ‘There should be no double standard in quality. If the quality of an item is unacceptable in the donor country, it is also unacceptable as a donation‘. Expiry dates mean everything. Once a product is expired in the UK, it cannot be used, in adherence with NHS guidelines. The product may be perfect. It may be useable. There may be absolutely nothing wrong with it. But try sending that product over to the Congo where there is a dying child desperately in need of a shunt, any shunt, and it’ll be stopped at customs. Because we wouldn’t use it in the UK. The fact that we have thousands of brand new, state-of-the-art, shiny shunts available on tap, for free, for anyone who needs one here courtesy of the NHS isn’t taken into consideration in the WHO guidelines. The countries who need these perfect shunts don’t have another option. There is no choice, other than certain, slow, agonising death for the child concerned.
Recently The Sun newspaper covered the story of little Roona Begum from India, who had advanced hydrocephalus; you may have read about it. Two students set up a public campaign to get funding for her surgery, which was performed earlier this year, after pictures of her were circulated widely on the public media.

Roona Begum – a shunt was found for her and surgery was performed.

What I found interesting was reading the many hundreds of comments left by readers under the articles about Roona. It was clear that many of them didn’t even know this condition existed and were up in arms that nothing had been, up until now, done for her. It was fantastic that she was able to have the surgery and is – so far – doing well although many thousands still need to be raised for further surgeries; it was never going to be a quick recovery process with hydrocephalus that far advanced. But the whole story leaves a bad taste in my mouth. Not that Boona got treated – thank God for her and her family that she did – but that she is just one child. One child out of thousands and thousands who was lucky enough to have the spotlight shone on her and as a result get help. This has been going on for years. There are lots more looking exactly as she did. Right now, across the world there are children lying in huts, unable to move, hideous sores on the backs of their heads because of it, in pain with no access to medication to ease it, slowly dying. Just because the media hasn’t covered all their cases doesn’t mean it’s not going on, every day, right this second.

Governments need convincing, guidelines need changing

Once my surgery (surgeries?) is/are over, I shall be cracking on with the proposal for the Vietnamese government which I am working on with Lewis Thorne and Kim Nguyen Browne. Kim is working with the Government side and Lewis and I are putting the proposal together; we are aiming to prove once and for all that both economically and ethically it is absolutely not beneficial to continue to leave these children untreated. The cost of everyday nursing, clothing, food, medications (if there are any) and accommodation for terminal children until they pass away is huge compared to the comparatively minimal cost of a shunt surgery. And if many of the shunts can be donated, recently expired products from the UK, the US, Canada and Europe which have been passed as safe to use, the cost to these governments receiving them will be even less. If this proposal succeeds, we intend to roll it out to other health ministries and governments in developing countries. But the WHO and the NHS may need to be flexible and introduce a bit of wiggle-room regarding their restrictions on expiry dates. At the end of the day, as long as the products have passed some essential checks to ensure their safety and useability, they should be available for donation. They should not get stopped at customs. Codman UK should NOT be questioned on their ethics for wanting to donate expired shunts; this is what is happening there right now, hence the delay in getting the Bactiseal shunts to Kenya – and these are shunt manufacturers who are being challenged!! The only ethics that should be questioned are those of the people wanting to place a block on donation and instead send all the good shunts to UK landfill, thus ensuring that hundreds of children across the world will not get the treatment they deserve.
It’s all very well for people-in-suits to sit at their desks here, in their plush offices, after a nice lunch, and make such decisions. If they were out there, if it was their child, if they had no other option, if there was an offer of help in the form of a donated shunt, they’d take it. You can bet your life they’d take it. This picture features at the beginning and end of this post was kindly offered to me by a very talented photographer, Daniel Cima. You can see more of his amazing work at www.danielcima.com. This image sums up the horror and the pain – both physical and mental – of the children and their families caught up in the nightmare of untreated hydrocephalus. I couldn’t tear myself away from it when I first laid eyes on it. As I sit here and look at this image, my own shunt is failing and therefore I’m looking at it with some real understanding of the pain that child is feeling. Lying down is agony. But I have the reassurance that in a weeks time I will be in hospital and in a couple of weeks I’ll most likely have a new shunt. I have hope. I have a light at the end of the pain tunnel. And God do I feel guilty when I look at that photo. I want to run over there, hand them a shunt and escort them to a surgeon. We have hundreds of shunts here which will not be used. They’ll be thrown away. Please, WHO and NHS, have some sense when we approach you later this year. Sometimes guidelines are helpful and sometimes they spill over into over-cautious and restrictive. Please identify where you need to relax the reins and realise that just because a shunt would not be used here, doesn’t mean that it can not be used elsewhere. If the picture below cannot convince them that things need to change then I don’t know what else we can do.

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What’s it really like to have a brain surgery? – Living with hydrocephalus

July 15, 2013

If I had a pound for every time somebody has exclaimed; ‘you’ve had brain surgery? What was that like?’, I wouldn’t have to work. Well, maybe I’d have to work a bit – but I could certainly reduce my hours drastically. Brain surgery has a stigma surrounding it similar to that of cancer; people fear it. Even though, like cancer, treatment had catapulted in effectiveness and safety over the years, it still holds a dread for many people and when faced with it, it can be all-consuming. It’s not surprising really, given the fact that the brain controls your entire body. To have it once is certainly an experience, a story to tell at the pub. To have it nineteen times as in my case is, I suppose, a little odd.
I thought I’d do a series of short-ish (I can hear the cheers already) posts on what it really feels like to have brain surgery, to have a shunt inside you, to experience overdraining/underdraining and so on, to give an honest picture of what it’s like for those maybe facing it for the first time or who sometimes wonder if they’re the only ones who feel a certain way. Although every body is different, my experiences over the years and conversations with the many, many shunted folk I have had the pleasure to meet have taught me that actually, our experiences can feel quite similar, both physically and emotionally. I’ve linked to some pictures of scars and so on which you may not want to look at, so just don’t click on the links if so. So let’s start with the big one;

What’s it really like to have a brain surgery?

Well, I’m not going to lie; it’s not exactly fun. Given the choice of that and a champagne picnic in the park, I know what I’d choose. But it also isn’t necessarily all that awful. In fact, in many cases it can be better than you’d hoped. A lot of what makes it bad stems from what takes place in our minds and we can, to a degree, control that. This, I have learned, is the difference between having a horrible experience and an okay one. Yes, brain surgery can be okay.

Pre-surgery
The days leading up to the surgery itself are important; depending on how ill you are will determine what you’re able to do, obviously, but it’s good to have distractions if you can. My first ever brain surgery (to install the first shunt), even though it happened thirteen years ago, is crystal clear in my mind to this day. That’s because I was so damn scared. My stomach was in knots all the time (this is normal), I lost my appetite (also normal) and wanted to crawl under the bed until it was over (again, normal). Luckily I was well enough – just – to be driven around in a car so the day before my parents took me for a pub lunch (no alcohol!) to take my mind off it. It worked. It was a lovely Spring day and even though the thought of the surgery tomorrow kept looming up at me like a tidal wave, I found myself wanting to and needing to push it to the back of my mind. So I did and managed a lovely lunch with my family. Eating is important; keeps your blood sugars steady as well as your blood pressure level and that helps. It also helps if you can remind yourself of the thousands of people across the world who have brain surgery every single month and who are fine afterwards. Focusing on the teeny proportion who might be suffer a complication, I found, does not help. At all.
The morning of the surgery itself I was starving; nil by mouth, obviously! This doesn’t help the nerves so again, keeping busy is good. I watched a lot of crap telly that morning. When I didn’t want to watch telly any more, I read crappy magazines – you know, those ‘chat’ type magazines where people sell their stories of how their breasts ‘exploded’ after surgery and so on. Some of the stories are so awful (if they are in fact true) that brain surgery suddenly does seem like a champagne picnic in the park.
I did have a complete break-down though, mid-morning. Suddenly the fear and nerves got the better of me and I bawled like a two year-old, loudly, snottily and unashamedly. I’d never had a surgery and having seen my dad go through it when I was eleven (he had two brain haemmorhages and a blood clot and very nearly died), I simply wanted to crawl under the bed I’d mentioned earlier. It didn’t last long though. Fifteen minutes later and I felt a lot better. Cry if you need to and don’t worry what others think; also talk to your surgeon/anaesthetist about your fears. He/she will have heard it all before and be very kind and give you a hanky, the way mine did.

The anaesthetic room
Funnily enough, this scared me probably more than the thought of the actual surgery. I dreaded it, not having had an anaesthetic before. I couldn’t see how I could be wide awake one minute and then something would force me to go to sleep the next. Fast foward thirteen years and the anaesthetic is my favourite part of any hospital stay. Yes, I’m being serious! I actually look forward to it! In the National Hospital, they have special anaesthetic rooms next to the operating theatres themselves, which I prefer.

The anaesthetic room at the National Hospital looks exactly like this one. I like ’em.

Operating theatres I find a bit large and scary. They’re okay; but I prefer the little cosy rooms next to them. It’s always the same; you lie on your trolley, blanket over you whilst the anaesthetic team take your blood pressure, check your heart rate by sticking those little sticker things you see on ‘Casualty’ over your chest, ask you lots of questions about who you are (they don’t want to knock out the wrong person) and then chat to you about all sorts to relax you and put you at ease. They’ll put in a cannula if you don’t already have one; that’s a very fine tube in the back of your hand so they can put the medicines in there without having to keep on injecting you. It’s a pin-prick, really not that bad. Then the fun starts! First they (sometimes, not always) give me what they call a ‘painkiller’ which will help relax me. This might also be given to you as a ‘pre-med’ on the ward. God, it’s fun. Seriously good stuff. It’s like having just had the BEST night at the pub, ev-ah. I have sometimes started singing after they’ve given me this. I kid you not. I sing loudly, too, like I’m hoping they’ll all join in. Sometimes they do; it depends on who’s in there with you. Having an anaesthetic truly feels like being very drunk; dizziness, sleepiness, a strange urge to giggle…sometimes you get pins and needles in your face. None of this is unpleasant, I promise. A bit strange the first time, yes…but not unpleasant. I think it’s fab. The really, really strange thing is ‘waking up’. I put ‘waking up’ in inverted commas because most of the time I’m not even aware that I’ve gone to sleep and then woken up later. I usually think I’m still in the anaesthetic room and the staff have just changed over. It’s that quick and that seamless. Seriously, you don’t even dream!

The Recovery Room
This is usually where you’ll wake up. After nineteen surgeries, I am yet to wake up anywhere other than here. These rooms are much bigger than anaesthetic rooms but are not as cosy as hospital wards.

It’s big, it’s echoey and lots of beeps and alarms go off in here. Meh.

To be honest, waking up is not my favourite bit. Once I’m properly awake, I usually feel a bit uneasy because I don’t know what’s been done exactly during the surgery (sometimes when they ‘get in there’ they have to change their course of action) and I feel all groggy and confused. My heart rate tends to race and sets all the alarms off but it’s never dangerous; it’s just what my body does after anaesthetic. As I said before, every body is different so you may well not experience this. You will shiver because the operating theatres are kept very cool indeed and you’ll have been lying in there for hours. The nice thing is having the heated blankets put on you, which they have lots of..very toasty! Your throat will probably be sore from the breathing tube but you should be able to have sips of a drink. At the National, they always let us have a cup of tea (through a straw) and I swear, it’s The. Best. Cup. Of. Tea. In. The. World. Nothing ever tastes as good! Usually I’m pumped full of morphine for the pain so I can still feel pretty woozy from that alone. As you become more aware as the anaesthetic wears off, you may become aware also of pain and discomfort. Don’t be a warrior; take the drugs! After a few hours in the recovery room, once they’re happy with how you are, they release you for good behaviour. Back to the ward you go.

The first few days
The first day itself you’ll probably feel sleepy but okay. They pump you so full of painkillers during the surgery itself that it’s relatively easy to keep on top of the pain. Back on the ward they’ll check your blood pressure, pulse, heart rate and so on every couple of hours. You can EAT! Hurrah! But don’t be surprised if you feel quite nauseous; lots of morphine can do this. I tend to vomit for hours if I have too much so I try and limit it. Morphine can also make going to the loo a bit weird; even if you have a full bladder, it seems to not want to come out. Again, all this is normal but it can be odd the first time! The physiotherapists or nurses usually try and get you up and about at some point on the first day unless you’ve had your surgery late or if you’re really floored afterwards. Don’t do what I tend to do and try and go for a walk on your own after five minutes. I blame the morphine again! It can make you feel invincible. I have got into trouble for leaving the ward to go for a walk as soon as I’m back. Wait until they get you to do it with their help, unless you want to end up in the ‘naughty spot’; right next to the nurses station so they can keep a close eye on you!
The next few days you should (hopefully) start to feel bored with being in hospital. I say ‘hopefully’ because this is usually a good indicator that you’re well enough to go home soon. The stitches or staples will probably itch a bit but as long as they’re not oozing or looking infected, that’s fine. Depending on what type of brain surgery you’ve had, you’ll probably feel some strange and not altogether welcome sensations in your head. With a new shunt, I feel very tight and stretched over where the new shunt tubing is. With my first one, I heard ‘gurgling’ in my head which was rather alarming. Turned out it was just the fluid passing through the shunt valve. Now the shunts I have ‘buzz’ when the valve works. Anything that alarms you, tell your surgeon. Chances are, he/she has heard it all a hundred times before and can reassure you.

The next few weeks
I covered a few points in my post about recovery: click here to read it. I think the most important thing post-brain surgery is to remember that you’ve had a whopping great operation. Your brain is going to be swollen and bruised from having someone rummage around inside it. The anaesthetic itself is a powerful cocktail of drugs and that’s just for starters. So you’re bound to feel wiped out. Recovery can be hard; everything hurts, the scars itch like mad, you’re left with half a head of hair and resemble Frankenstein. I have added a photo of me looking absolutely rubbish post-op to reassure those who feel the same way that you’re not alone. I’ve also added three photos of scars immediately post-op – the other one’s here – and one taken a couple of weeks later. Scars like this can look a bit shocking at first. But you should be proud of every scar; they’re proof that you’ve been through a lot and come through the other side. Yay you!
As the weeks go on, you’ll feel stronger but don’t push yourself. It’s very easy to overdo things without realising. Rest when you need to, don’t rush back to your job too early (I once returned after ten days; stupid, stupid me) and hey, enjoy some R&R!! You deserve it! Heck, you’ve just had brain surgery!

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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….

Not a magazine or a fish tank in sight. I had to resist an overwhelming urge to play around with them all. Luckily Lewis came in to get me before I had a chance to get my hands on them and rearrange them into the ‘conversations at a bus stop’ scenario I had in mind.
My meeting with Lewis was the most uplifting part of my work on this project so far. I had honestly thought he might offer me some much-needed advice, or give me a couple of contacts but he went above and beyond this. I was glad I’d swotted up though because everything was fresh in my mind and we were able to have a pretty lengthy and detailed discussion on options and plans. He said that this is a cause close to his heart as he had been out to sub-Saharan Africa a few years ago, taking some medical equipment to donate to charities and due to charity politics hadn’t been able to give what he had taken out there. He has ideas for reducing the costs of surgeries generally and also alternative uses of shunt treatments – I can’t go into everything now because a) it’s in the early stages and b) it’s too medical – he would have to explain it properly! Having him on board is so fantastic and such a relief, I can’t begin to describe it. I now have someone who seems as passionate about this as I am and who I can run all the questions I previously had no answers to by. He inspected the donated shunts from Medtronic (as they’re expired) and pronounced them ‘absolutely perfect!’. So we’re working together on producing a ‘business plan’ to present to the Vietnamese government and show them that the surgeries can be and are worth investing in both economically and – most importantly – to ease the suffering of the children. The cost to the government for nursing these untreated children for years until they die is most likely way greater than the cost of cheap but effective shunt surgeries using effective equipment. We are both aware that persuading a communist government who are currently heading down the US-based system of insurance health care is not going to be simple. Lewis wants to get something published as that will carry a great deal more weight. Once we have that in place we can roll it out to more governments who may need persuasion that shunting children is a very worthwhile and very necessary exercise. He also has access to spare shunts which he is sourcing this very moment. I am starting to wonder what the heck I would have done without him now. I had, as I said to him in our meeting, reached the limit of how far I could go alone. All the research in the world won’t change the fact that I am a mere patient who has neither the expertise nor the contacts medically to make sure I’m making the correct shunt decisions. I have expertise in how it feels to have hydrocephalus but that, and a lot of passion concerning the issue, is about as far as it goes! The fact that Lewis is so busy as a surgeon and is still happy to help and give me his time, free of charge, with the support and encouragement that he’s already shown in just a couple of weeks, has made me feel for the first time that we can truly make a difference to untreated children with hydrocephalus across the world. Power in numbers!

Fab Thing Number Three

The same day as my meeting with Lewis, I managed – quite by chance – to secure an impromptu meeting with the surgical manager at Medtronic, the very company who had kindly donated the three shunt systems for Vietnam. Louise (the lady in question) just happened to be at a hospital I was visiting to discuss shunt donations with. The person I was speaking with about their shunts suddenly broke off with a ‘Eureka!’ moment as she remembered that Louise just happened to be in the building that very day and would I like to meet with her? Would I!! Louise was in surgery, overseeing the use of a new surgical drill Medtronic had just produced so she came out to meet me, fully ‘scrubbed up’ in her blue theatre outfit. She was very enthusiastic about the project, the fact that I already had three Medtronic shunts and even more about the fact that I myself have a shunt. This is a detail that does seem to ‘wow’ the medical personnel I come into contact with. To me it’s no great shakes; I have a shunt. And yes, this is why I’m doing this project, because I know how hideous hydrocephalus can be. But sometimes I think they half-expect people with shunts to be ill-looking or not as energetic maybe as I can come across sometimes. I can sort of understand this, given that they are seeing people in hospital most of the time when they’re ill and either pre or post-surgery! I feel like a shunt commercial; ‘Yes! You too can look and act like this if your shunt works properly! Because you’re worth it!’. Anyway, Louise was fantastic and promised to look at the fundraising side of things as well as establishing some proper support from Medtronics overseas suppliers as they’ll have greater numbers of shunts to spare. And she was as good as her word; a few days later I received an email from Louise saying that she’d loved meeting me and she was currently talking to Head Office to get some plans in place. All from a chance five-minute meeting outside Theatre Two!

Fab Thing Number Four

Last but oh-so-not-least, I finally got to meet with Kim Nguyen Browne yesterday, from Go Vap Orphanage!

Kim looking happy with two of the shunts!

We met in London so I could hand over the Medtronic shunts so they can get back to Vietnam and be used. Meeting Kim was like meeting a long-lost friend, although we’ve only ever spoken on the telephone up until now. She, like all the others I have met and who are now involved in the project I only started in April, has an absolute heart of gold when it comes to helping others and I don’t give a toss how sappy that may sound. The work she’s done to help these children already and the contacts she’s established with other charities and organizations helping her is impressive to say the least. She was overjoyed to get the shunts and our meeting was far too brief for my liking but hopefully I may be able to meet her for a longer lunch when I next meet with Lewis or on another of my now-frequent trips to London. She was so helpful in what we discussed and she said she will post pictures of the children who actually receive these shunts and allow me to follow their progress so of course when that happens I will share with you! It will be so amazing to see the faces of the children who will (fingers crossed) soon be out of pain thanks to these shunts. And I cannot stress enough how good it felt to hand the shunts over to her. I thought that moment would take about six or seven months to come about, not two! Kim uses the following as the motto for the Vietnam Volunteer Network she manages and the work they do at Go Vap and all the other orphanages they help; ‘Together we can make a difference’. I’ve learned this lesson more than any other since I started. There was always going to be a ceiling on how far I could get alone. Now with Lewis, Kim, Louise, Mr Mallucci, Tim and Louisa at Codman and every single other person who has helped/shown an interest/given me a contact/urged me to keep going, I’m starting to see that this project now does have, and will continue to grow, LEGS! My determination to get changes made in both our healthcare system (STOP throwing useable products into landfill sites and send them to where they can be used to save lives) and overseas (don’t brush hydrocephalus under the carpet any more when seventy-nine percent of new cases this year will be in developing countries) is absolutely renewed. Not that it went anywhere; it was just wondering which path to take next. Now I have a path. With friends.

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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 – REEEEEESULT!

April 12, 2013

If you’ve just jumped in, you can read about my Shunt Donation Project (no. 6 on the List) here.

And if you’re wondering what this ‘F-List’ I keep banging on about is, you can read about that here.

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

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

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

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