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.\u00a0 The Bactiseals are actually the ‘tubing-only’ bit of a shunt, without the valve bit which regulates pressure.\u00a0 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!\u00a0 A shunt-match made in Heaven.\u00a0 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.\u00a0 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.\u00a0 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.\u00a0 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.\u00a0 Codman box – tick!<\/p>\n
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.\u00a0 The reply was from Mr Lewis Thorne, consultant neurosurgeon at ‘my’ hospital (haha!), the National in Queen Square.\u00a0 He also works at the Royal Free in London.\u00a0 Lewis had actually operated on me about nine years ago when he was a registrar at that time for Mr Watkins.\u00a0 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.\u00a0 Lewis was great, very kind, friendly and reassuring.\u00a0 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<\/em> hideous experience was shunt infection – both of them).\u00a0 <\/em>It wasn’t Lewis’ fault that it was so awful though, so I let him off.\u00a0 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.\u00a0 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.\u00a0 After that I didn’t see Lewis at all and assumed he’d left the hospital for pastures new.\u00a0 He had, initially, but returned recently.\u00a0 I found him whilst Googling ‘information about shunts’ one evening.\u00a0 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!\u00a0 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!’.\u00a0 Unfortunately it had been given in 2011 so I was more than a little late.\u00a0 But I pounced on it and was amazed to see that the person who had given the lecture was Lewis Thorne.\u00a0 If he knew everything there was to know about shunts, he was my man!\u00a0 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.\u00a0 Result!\u00a0 I arranged to meet with him at his office for a chat and that took place last Wednesday.\u00a0\u00a0 When I told Mum I’d be meeting with him, she said, ‘does he remember you, do you think?’.\u00a0 I had wondered myself, until I noted that he had begun his email to me ‘Dear Mr Adams’.\u00a0 Clearly he didn’t remember me.\u00a0 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.\u00a0 I was surprised how nervous I was about the meeting; I had a neurosurgeon actively interested and offering help.\u00a0 I didn’t want to screw it up so found myself swotting as though for an exam on what I’d done so far!\u00a0 Needless to say, I shouldn’t have worried.\u00a0 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!\u00a0 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.\u00a0 It was full of, er….skulls.<\/p>\n Not a magazine or a fish tank in sight.\u00a0 I had to resist an overwhelming urge to play around with them all.\u00a0 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. 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.\u00a0 Louise (the lady in question) just happened to be at a hospital I was visiting to discuss shunt donations with.\u00a0 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?\u00a0 Would I!!\u00a0 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.\u00a0 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.\u00a0 This is a detail that does seem to ‘wow’ the medical personnel I come into contact with.\u00a0 To me it’s no great shakes; I have a shunt.\u00a0 And yes, this is why I’m doing this project, because I know how hideous hydrocephalus can be.\u00a0 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.\u00a0 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!\u00a0 I feel like a shunt commercial; ‘Yes!\u00a0 You too can look and act like this if your shunt works properly!\u00a0 Because you’re worth it!’.\u00a0\u00a0 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.\u00a0 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.\u00a0 All from a chance five-minute meeting outside Theatre Two!<\/p>\n![\"I'm](\"http:\/\/jordantheheadcase.files.wordpress.com\/2013\/06\/skulls1.jpg\")
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\nMy meeting with Lewis was the most uplifting part of my work on this project so far.\u00a0 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.\u00a0 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.\u00a0 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.\u00a0 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!\u00a0 Having him on board is so fantastic and such a relief, I can’t begin to describe it.\u00a0 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.\u00a0 He inspected the donated shunts from Medtronic (as they’re expired) and pronounced them ‘absolutely perfect!’.\u00a0 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.\u00a0 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.\u00a0 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.\u00a0 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. \u00a0 He also has access to spare shunts which he is sourcing this very moment.\u00a0 I am starting to wonder what the heck I would have done without him now.\u00a0 I had, as I said to him in our meeting, reached the limit of how far I could go alone.\u00a0 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.\u00a0 I have expertise in how it feels to have <\/em> hydrocephalus but that, and a lot of passion concerning the issue, is about as far as it goes!\u00a0 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.\u00a0 Power in numbers!<\/p>\n